Conf Program FINAL31212

The Second National Conference on Blood
Disorders in Public Health

From Outcomes to Impact: Addressing translational blocks to improving the public’s health
March 12 –14, 2012—The Westin Atlanta Perimeter North, Atlanta, GA
National Center on Birth Defects and Developmental Disabilities

Division of Blood Disorders
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ii
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Conference Sponsors
Hemophilia of Georgia
U.S. Department of Health and Human Services

Centers for Disease Control and Prevention (CDC):
National Center on Birth Defects and Developmental Disability
National Center for Chronic Disease Prevention and Health Promotion
Health Resources and Services Administration (HRSA):

Maternal and Child Health Bureau
National Institutes of Health (NIH):
National Heart Lung and Blood Institute

Division of Blood Diseases and Resources
Office of Rare Diseases
National Professional Organizations
American Society of Hematology (ASH)
American Society of Pediatric Hematology / Oncology (ASPHO)
2 The Second National Conference on Blood Disorders in Public Health: 2012

TABLE OF CONTENTS
Table of Contents
Conference Sponsors 2
Welcome 4
Conference Partners 5
Planning Committee 6
Plenary Speakers 10
Agenda at a Glance 25
Expanded Agenda 28
Abstracts and Session Summaries 42
Upcoming Conference Preview 133
Index of Authors, Coauthors, Invited Speakers, and Moderators 134
From Outcomes to Impact: Addressing translational blocks to improving the public’s health 3
Welcome
WELCOME
Dear Participant:
On behalf of the Planning Committee and Conference Co-Sponsors welcome to the

2nd National Conference on Blood Disorders in Public Health.
This year’s conference is truly unique. First, it is taking place within a context that
finds our nation and world in the midst of crises that challenge us individually and
collectively to achieve more with less. It is a context that demands we evaluate
existing premises even as we construct new paradigms. One in which no intervention,
program, or project, regardless of how dear or favored, is beyond the scrutiny of
being measured, monitored and documented for impact.
This year’s conference is also unique because it is not merely health focused but
leadership focused. Considering the many collective challenges the blood disorders
community is facing this conference represents a convention of leaders who do not
merely “know” but “do”; a convention of leaders who understand the times and know
what needs to be done.
It is within this context that we have convened leading experts and systems
thinkers to present, discuss and examine strategies, experiences and techniques
that focus on promoting and improving the health of blood disorder populations.
And it is within this context that I thank you for your participation and invite you
to actively and substantively participate in the 2nd National Conference on Blood
Disorders in Public Health.
Sincerely,
Hani Atrash MD, MPH Coleen Boyle PhD, MSHyg

Director, Director,
Division of Blood Disorders National Center on Birth Defects and
Developmental Disabilities

Conference Partners
CONFERENCE PARTNERS
Non-Federal Partner Organizations

American Thrombosis and Hemostasis Network (ATHN)
Association of Public Health Laboratories (APHL)
Committee of Ten Thousand (COTT)
Cooley’s Anemia Foundation
Daniella Maria Arturi Foundation (DBA)
Foundation for Girls and Women With Blood Disorders
Hemophilia Federation of America (HFA)
Hemostasis and Thrombosis Research Society (HTRS)
Hereditary Hemorrhagic Telangiectasia Foundation, International (HHT)
Iron Disorders Institute (IDI)
National Blood Clot Alliance (NBCA)
National Hemophilia Foundation (NHF)
Sickle Cell Disease Association of America (SCDAA)
Platelet Disorder Support Association (PDSA)
Venous Disease Coalition (VDC)
Worldwide Initiative on Social Studies in Hemoglobinopathies (WISSH)
International Partners
Global Sickle Cell Disease Network
World Federation of Hemophilia (WFH)
Federal Partners
U.S. Department of Health and Human Services
Centers for Disease Control and Prevention (CDC)
Division of Healthcare Quality Promotion
Division of Nutrition, Physical Activity, & Obesity
Division of Cancer Prevention and Control
Division of Reproductive Health
Health Resources and Services Administration (HRSA)

National Institutes of Health (NIH)
National Heart Lung and Blood Institute (NHLBI)
Office of Rare Diseases (ORD)
Planning Committee
PLANNING COMMITTEE
The 2nd National Conference on Blood Disorders in Public Health Planning Committee Co-Chairs
wish to express our gratitude to all committee members for their support in the planning and
implementation of a successful program. We also wish to acknowledge the individual and collective
efforts of all members whose perspectives and input we are confident have worked to strengthen
this conference.
Internal Planning Committee:

Hani K. Atrash (Chair), DBD Amanda Payne, DBD
hka1@cdc.gov bvx2@cdc.gov
Christopher S. Parker (Co-Chair), DBD Meredith Pyle, DBD

csp2@cdc.gov mkj8@cdc.gov
Sheree Boulet, DBD Nimia Reyes, DBD

sbu1@cdc.gov nfr2@cdc.gov
Brandi Cooke, DBD Cynthia Sayers, DBD

inm4@cdc.gov cay1@cdc.gov
Melissa Creary, DBD Gretchen Simmons, DBD

dtu9@cdc.gov guu3@cdc.gov
Barbara Goldston, DBD Mike Soucie, DBD

bgl0@cdc.gov jps9@cdc.gov
Scott Grosse, DBD Cindy Su, DBD

sgg4@cdc.gov yds0@cdc.gov
Fiona Kelly, DBD

gvu0@cdc.gov
External Planning Committee:

Committee Chair: Joseph Telfair,
University of North Carolina at Greensboro
j_telfai@uncg.edu
Committee Co-Chair: Christopher Parker,

Division of Blood Disorders, CDC
csp2@cdc.gov
Committee Co-Chair: Hani K. Atrash, Division

of Blood Disorders, CDC
hka1@cdc.gov

PLANNING COMMITTEE
Federal Partner Representatives:

Denise Cardo, Division of Healthcare Violanda Grigorescu,
Quality Promotion (CDC) Division of Reproductive Health (CDC)
dcardo@cdc.gov vdg6@cdc.gov
Parminder Suchdev, Division of Nutrition, Physical Sara Copeland, Health Resources and
Activity, & Obesity (CDC) Services Administration (HRSA)
psuchdev@cdc.gov scopeland@hrsa.gov
Marcus Plescia, Division of Cancer Kathryn McLaughlin, Health Resources and

Prevention and Control (CDC) Services Administration (HRSA)
ifs1@cdc.gov KMcLaughlin@hrsa.gov
Wanda Barfield, Lorraine Brown, Health Resources and Services

Division of Reproductive Health (CDC) Administration (HRSA)
wjb5@cdc.gov LBrown@hrsa.gov
Ernest Moy, Agency for Healthcare W. Keith Hoots, National Heart Lung
Research and Quality (AHRQ) and Blood Institute (NHLBI)
Ernest.Moy@ahrq.hhs.gov hootswk@nhlbi.nih.gov
Michele Lloyd-Puryear, Health Resources and

Services Administration (HRSA)
Michele.Puryear@hrsa.hhs.gov
Subject Matter Experts:

Judith Baker, Stephan Moll, University of North Carolina
University of California, Los Angeles stephan_moll@med.unc.edu
JudithBaker@mednet.ucla.edu
Gary Raskob, University of Oklahoma
Roshni Kulkarni, Health Sciences Center
Michigan State University Gary-Raskob@ouhsc.edu
Roshni.Kulkarni@hc.msu.edu
Andra James, Duke University
Craig Kessler, Georgetown University andra.james@duke.edu
kesslerc@gunet.georgetown.edu
Ellis Neufeld, Children Hospital Boston
Lenetta Jordan, Memorial Regional Hospital Ellis.Neufeld@childrens.harvard.edu
LJordan@mhs.net
Alan Cohen,
Allan Platt, Emory University The Children’s Hospital of Philadelphia
aplatt@emory.edu cohen@email.chop.edu
Kwaku Ohene Frempong,

The Children’s Hospital of Philadelphia
ohene-frempong@email.chop.edu
PLANNING COMMITTEE
Partner Organization Representatives:

Stephanie Koplan, Ruth Brown, Hemophilia of Georgia
American Society of Hematology (ASH) rrbrown@hog.org
skaplan@hematology.org
Stephan Moll, Hemostasis and Thrombosis
Diane Aschman, American Thrombosis and Research Society
Hemostasis Network (ATHN) stephan_moll@med.unc.edu
daschman@athn.org
Marianne Clancy, Hereditary Hemorrhagic
Guy Young, American Society of Pediatric Telangiectasia Foundation, International
Hematology/Oncology (ASPHO) mariannes.clancy@hht.org
Gyoung@chla.usc.edu
Cheryl Garrison, Iron Disorders Institute (IDI)
Jelili Ojodu, Association of Public Health cgarrison@irondisorders.org
Laboratories (APHL)
Alan Brownstein,
jelili.ojodu@aphl.org
National Blood Clot Alliance (NBCA)
Dave Cavenaugh, abrownstein@stoptheclot.org
Committee of Ten Thousand (COTT)
Val Bias,
cott-dc@earthlink.net
National Hemophilia Foundation (NHF)
Gina Cioffi, Cooley’s Anemia Foundation consultvb@hemophilia.org
g.cioffi@colleysanemia.org
Sonja Banks, Sickle Cell Disease
Shannon Scott, Daniella Maria Arturi Foundation Association of America (SCDAA)
(DBA) sbanks@sickledisease.org
shannon@obrienllc.com
Caroline Kruse,
Ann-Marie Nazzaro, Foundation for Women & Platelet Disorder Support Association
Girls with Blood Disorders ckruse@pdsa.org
amnazzaro@fwgbd.org
Marilyn Manco-Johnson,
Kimberly Haugstad, Venous Disease Coalition (VDC)
Hemophilia Federation of America (HFA) Marilyn.Manco-Johnson@ucdenver.edu
k.haugstad@hemophiliafed.org
International Partners:
Simon Dyson, Isaac Odame, Mark Skinner,
Worldwide Initiative on Global Network on World Federation of Hemophilia
Social Studies Sickle Cell Disease (WFH)
in Hemoglobinopathies isaac.odame@sickkids.ca mskinner@vzavenue.net
(WISSH)
sdyson@dmu.ac.uk

CONFERENCE FLOOR PLAN
Conference Floor Plan (diagrams)
Concourse Level
Lobby Level
PLENARY SPEAKERS
Plenary Speakers
Monday, March 12, 2012
Welcome and Brief Updates: Federal Partners Local Host 8:30-9:00 AM
Hani Atrash MD, MPH is the Director of the Division of Blood Disorders, National Center on Birth
Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention
(CDC). Dr. Atrash is an Obstetrician/Gynecologist trained in preventive medicine
and public health. He spent most of his career with the CDC where he served as
Chief of the Pregnancy and Infant Health Branch. He led activities on safe
motherhood, maternal and child health epidemiology, preterm delivery, and
maternal and infant health surveillance and research, and established the MCH
Epidemiology Conference and Awards. Between 2001 and 2008, as Associate
Director for Program Development with the NCBDDD, Dr. Atrash started and
spearheaded the preconception care initiative. Dr. Atrash has authored and
co-authored over 160 scientific articles in peer-reviewed journals, reports, and
book chapters. Dr. Atrash received numerous honors and awards within CDC and at the national level
for his leadership and accomplishments.
Coleen Boyle PhD, MSHyg serves as Director of the National Center on Birth Defects and
Developmental Disabilities (NCBDDD) at CDC. Dr. Boyle joined NCBDDD’s Division of Birth Defects
and Developmental Disabilities in 1988, first as Section Chief and later as Branch Chief and Division
Director. In 2001, Dr. Boyle was named the Associate Director for Science and
Public Health for CDC’s newly created National Center on Birth Defects and
Developmental Disabilities (NCBDDD). In October 2004, she was appointed the
Director of the Division of Birth Defects and Developmental Disabilities. Before
joining CDC in 1984 to work on the Agent Orange studies, Dr. Boyle was a faculty
member in epidemiology at the University of Massachusetts, Program in Public
Health. As part of the Agent Orange staff, Dr. Boyle served as the principal
investigator for the Vietnam Experience mortality studies and as senior
epidemiologist for a large, multi-centered cancer case-control study. Her interest
and expertise is in the epidemiology and prevention of birth defects and developmental disabilities. She
is the recipient of the CDC Charles C. Shepard Award for scientific excellence in 1997 and 2004 and has
authored or co-authored more than 100 peer-reviewed and other scientific publications. Dr. Boyle
received her MSHyg in biostatistics and PhD in epidemiology from the University of Pittsburgh, School
of Public Health, and she completed postdoctoral training in epidemiologic methods at Yale University.

PLENARY SPEAKERS
W. Keith Hoots MD is the Director of NHLBI’s Division of Blood Diseases and Resources. Dr. Hoots
received his A.B. in English and Chemistry and his M.D. from the University of North Carolina (UNC) in
Chapel Hill, North Carolina. He completed his Pediatric Internship and Residency
at Children’s Medical Center, in Dallas, Texas. He returned to UNC for his
Fellowship in Pediatric Hematology Oncology and eventually joined the faculty at
M.D. Anderson. Dr. Hoots’ major interests involve the management and diagnosis
of congenital and acquired bleeding disorders and clotting disorders. His work
includes the creation of longitudinal follow-up of hemophilia cohorts with HIV
and hepatitis, gene therapy trials for Hemophilia A and B, clinical trials of new
clotting concentrates for Hemophilia A and B, and the impact of care and clotting
factor product on Hemophilia patient outcome. He also has a 20 year interest in
the diagnosis and treatment of diffuse intravascular coagulation (DIC), in particular DIC in head
trauma. He has been intimately involved in the development of safe coagulation factor products, having
completed his training as the HIV epidemic was evolving in hemophilia patients. By the late 1980’s, he
was able to return to the hemostasis focus which initially attracted him to the field, and he has
continued to be a productive investigator and collaborator. Dr. Hoots is a past member of the U.S.
Department of Health and Human Services Blood Safety and Availability Advisory Committee to the
Secretary of Health, past chair of the Medical and Scientific Advisory Committee for the National
Hemophilia Foundation and subcommittee co-chair of the DIC Subcommittee of International Society
of Thrombosis and Hemostasis. He has also been an associate editor for Seminars in Thrombosis and
Hemostasis and served on the editorial boards of Haemophilia, Haemophilia Forum and the
International Monitor on Hemophilia. He is a past president of the Hemophilia Research Society of
North America.
Trish Dominic CEO of Hemophilia of Georgia, began her career in hemophilia in 1976 at the Delaware
Valley Chapter of the National Hemophilia Foundation as Director of Volunteers rising to Executive
Director in 1981. She has served as the CEO of Hemophilia of Georgia for the past twenty-eight years
and during this time the organization has grown from a small chapter of the National Hemophilia
Foundation to an independent multi-service agency with a staff of 40 including outreach nurses and
social workers and a non-profit pharmacy. Agency programs and services include a summer camp for
children and teens, educational opportunities for clients and family members, and a variety of support
services. Today, HoG serves more than 1400 Georgians who have inherited
bleeding disorders. Ms. Dominic became the first regional director for Region IV
South in 1990, administrating Maternal and Child Health Bureau and Centers for
Disease Control and Prevention grants for hemophilia treatment centers in the
states of Georgia, Florida, Mississippi and Alabama. The agency also
administrated a Ryan White Title III grant for the region. Ms. Dominic was one of
the founding members for the Hemophilia Alliance and has served as the
President and on the Boards of the Alliance and the Alliance Group Purchasing
Organization. She currently serves on the Boards of the World Federation of
Hemophilia USA and the American Thrombosis and Hemostasis Network. Ms. Dominic and Hemophilia
of Georgia have received recognition from the National Hemophilia Foundation, the World Federation
of Hemophilia, TechBridge, the CDC and the Metropolitan Atlanta Community Foundation.
PLENARY SPEAKERS
R. Lorraine Brown (Cross) RN, BS, CPHP is the Program Director of the Hemoglobinopathy
Programs for the Health Resources and Services Administration. She has worked for the federal
government since 2002 and the Genetic Services Branch since 2006. Ms. Brown
is a pediatric nurse, graduated from Children’s Hospital School of Nursing,
Boston, MA. Her background is an Early Childhood Health Educator/Consultant/
Trainer providing health education to young children, their families and teachers
for over 30+ years. Ms. Brown has also completed course work at Johns Hopkins
Bloomberg School of Public Health and received a Certificate of Public Health
Practice (CPHP) in 2008. Prior to joining HRSA, she served as senior health
technical assistance specialist for Region I Head Start/Early Head Start programs.
Her prior work with HRSA was project officer supporting the Division of Child,
Adolescent and Family Health’s (DCAFH), National Healthy Child Care America (HCCA) program and
the State Early Childhood Comprehensive Systems (SECCS) grantees. As the Program Director of the
Hemoglobinopathy Programs, she provides oversight for two Sickle Cell Disease (SCD) programs; the
Sickle Cell Disease Newborn Screening Program (SCDNBSP); the Sickle Cell Disease Treatment
Demonstration Program (SCDTDP); and the Thalassemia program, responsible for assuring program
activities and outcomes are achieved.
Opening Plenary: Translating Science Into Action 9:00-10:30 AM
Wanda Barfield MD, MPH, FAAP is a Captain in the US Public Health Service and became the
Director of the Division of Reproductive Health, National Center for Chronic Disease Prevention and
Health Promotion at the Centers for Disease Control and Prevention in 2010.
Dr. Barfield is Assistant Professor of Pediatrics, Uniformed Services University
of the Health Sciences and Emory School of Medicine. She is a Fellow in the
American Academy of Pediatrics and serves as the CDC Liaison to the AAP’s
Committee on Fetus and Newborn. Dr. Barfield received her medicine and public
health degrees from Harvard University. Prior to serving in the Public Health
Service, she served in the U.S. Army as Director of the NICU at Madigan
Army Medical Center, Tacoma, Washington. She is board-certified in both
General Pediatrics and Neonatal-Perinatal Medicine.

PLENARY SPEAKERS
Craig Kessler MD is the Professor of Medicine and Pathology and attending physician in the Division
of Hematology-Oncology at Georgetown University Medical Center in Washington, DC. He serves as the
Director of the Division of Coagulation in the Department of Laboratory Medicine and is the Director of
the Therapeutic and Cellular Apheresis Unit. Dr. Kessler earned his medical degree from Tulane
University School of Medicine in New Orleans, Louisiana before moving to Baltimore, Maryland, in
1976 to assume a Fellowship in Special Hematology at Johns Hopkins Hospital.
Dr. Kessler joined the faculty at the George Washington University Medical
Center in Washington, D.C. in 1981 where he became a Professor of Medicine,
Chief of the Adult Component of the Washington Area Comprehensive Center for
Hemophilia and Thrombosis Care, and Chief of the Division of Hematology-
Oncology. Later, he joined the faculty at Georgetown University Medical Center
as Professor of Medicine and Pathology and maintained leadership of the
Hemophilia and Thrombosis programs.Dr. Kessler sits on several medical and
scientific advisory boards, and is Co-Chair of the World Hemophilia Alliance.
He is also Co-Editor of the journal Haemophilia and the Seminars in Thrombosis and Hemostasis and
serves as a reviewer for numerous other journals, including Blood, the Journal of the American
Medical Association, Thrombosis and Haemostasis, the American Journal of Hematology, and the
Journal of Thrombosis and Haemostasis. Dr Kessler has published many articles, books and book
chapters in the field of bleeding disorders and their treatment. He has been elected to Mastership
of the American College of Physicians and is currently Chair of the Medical and Scientific Advisory
Council for the National Hemophilia Foundation.
Jason Stein MD, SFHM is the Associate Vice Chair for Quality in the Department of Medicine and the
Director for Quality & Research for the Division of Hospital Medicine at Emory University. Dr. Stein
completed Internal Medicine residency at Barnes-Jewish Hospital at Washington University in St. Louis
and the Advanced Training Program in Health Care Delivery Improvement at Intermountain Health
Care. He is a former Web Editor for the Society of Hospital Medicine (SHM) and Assistant Editor for
the Journal of Hospital Medicine. Dr. Stein directed the Society of Hospital Medicine Quality Course for
4 years and is co-creator of the Society of Hospital Medicine’s national VTE Prevention Collaborative, a
program which has provided distance and on-site mentoring to over 40 medical
centers. Dr. Stein is currently a co-investigator and mentor for an AHRQ Health
Services Research Demonstration and Dissemination Grants focused on
Medication Reconciliation. Dr. Stein has co-developed hospital care improvement
strategies which have been incorporated into position papers published by the
U.S. Agency for Healthcare Research & Quality and the National Health Service
in the United Kingdom. Through experience conducting, teaching, and mentoring
quality improvement and lessons about embedding quality, reliability, and
patient-centeredness into hospital care, Dr. Stein and his team at Emory have
re-designed traditional medical wards into Accountable Care Units, each featuring unit-based physician
teams, Structured Interdisciplinary Bedside Rounds (SIBR), unit-level performance data, and unit-level
management between nurse and physician co-directors. The ACU model of care has been implemented
in both the United States and Australia.
PLENARY SPEAKERS
Sophie Lanzkron MD, MHS is an Associate Professor of Medicine and Oncology in the Division of
Hematology at the Johns Hopkins University School of Medicine. Dr. Lanzkron received her medical
degree from the Albert Einstein College of Medicine. She completed her internal medicine training at
the University of Maryland Medical System, and pursued her Hematology clinical and research
fellowships at Johns Hopkins. Dr. Lanzkron’s clinical and research interests have centered on the
delivery of high quality care to individuals with sickle cell disease. In 2008 she
received a K23 award from the NHLBI to examine barriers to the use of
hydroxyurea in adults with the disease. In 2009, while working full time, she
received her Master’s in Health Science from the Bloomberg School of Public
Health. Dr. Lanzkron serves on the NHLBI Expert Panel that is developing
guidelines for the management of sickle cell disease for primary care physicians.
In addition to her ongoing research interests, Dr. Lanzkron has established the
Sickle Cell Center for Adults at Johns Hopkins which in 2001 served the needs of
about 50 patients and has now grown to a multidisciplinary, comprehensive clinic
that cares for 500 adults with sickle cell disease. In 2008, Dr. Lanzkron opened the Sickle Cell Infusion
Clinic which provides urgent care to patients in crisis so that they can bypass the emergency
department. This clinic has led to a decrease in hospitalizations for sickle cell disease in Baltimore and
decreased costs to insurers. Most importantly, the Clinic provides a service that is improving the lives
of those with sickle cell disease. In addition to these clinical responsibilities, Dr. Lanzkron attends the
Heme-4B service during which she also provides hematology consultation services for the hospital.
Luncheon Plenary 12:30-2:00 PM
Christopher S. Parker PhD, MPH serves as the acting deputy director in the National Center on
Birth Defects and Developmental Disabilities (NCBDDD). Dr. Parker’s permanent position of record is
the deputy director of NCBDDD’s Division of Blood Disorders where he has
served since 2005. Prior to working in NCBDDD he served as the deputy
chief of the Maternal and Infant Health Branch within the CDC’s National Center
on Chronic Disease Prevention and Health Promotion’s, Division of Reproductive
Health. Dr. Parker has worked at county, state and national levels across
critical issues such as HIV/AIDS, tuberculosis, maternal and child health and
blood disorders. Dr. Parker holds a Ph.D. in health science from Touro
University; a MPH in policy and management from Emory University;
a MPA in health care administration from Louisiana State University
and a BS in Respiratory Therapy from the University of MS – Ole Miss.

PLENARY SPEAKERS
David Chambers DPhil is Associate Director for Dissemination and Implementation Research
at the NIMH, leading NIH initiatives around the coordination of dissemination and implementation
research in health. Since 2008, he has also been Chief of the Services Research
and Clinical Epidemiology Branch at NIMH, where he oversees research studies
on the access to and cost, quality and outcomes of mental health services. He
also continues to manage a portfolio of grants that study the integration of
scientific findings and effective clinical practices in mental health within real-
world practice settings. Prior to his arrival at NIMH, Dr. Chambers worked at
Oxford University, where he studied national efforts to implement evidence-
based practices within healthcare settings. Inherent in each of these research
areas is the necessary interface between researchers, practitioners and
policymakers in order to facilitate tangible public health impact.
Tuesday, March 13, 2012

Plenary ll: Public Health Approaches to Increasing the Recognition of Rare
Blood Disorders 8:30-10:00AM
Scott Grosse PhD is Research Economist and Associate Director for Health Services Research and
Evaluation in the Division of Blood Disorders, National Center on Birth Defects and Developmental
Disabilities (NCBDDD), Centers for Disease Control and Prevention (CDC) in
Atlanta, Georgia. He has degrees in economics and public health from the
University of Michigan and joined the CDC in 1996. Dr. Grosse uses
epidemiologic and economic methods to quantify health outcomes and potential
economic benefits of the prevention or early identification of various conditions.
In addition to research on specific diseases and public health strategies, Dr.
Grosse has published on health economic measures and methods. He recently
served as guest editor of a supplement to the American Journal of Preventive
Medicine on blood disorders. Dr. Grosse currently serves as Division of Blood
Disorders spokesperson on venous thromboembolism (VTE) and is leading the preparation of an
evidence review and public health recommendations to support the prevention of hospital-associated
VTE which will be published by CDC in 2012.
PLENARY SPEAKERS
Jeffrey M. Lipton MD, PhD is the Chief of Hematology/Oncology and Stem Cell Transplantation at
the Steven and Alexandra Cohen Children’s Medical Center of New York, New Hyde Park, NY, Center
Head, Patient Oriented Research, The Feinstein Institute for Medical Research,
Professor, Elmezzi Graduate School of Molecular Medicine, The Feinstein
Institute for Medical Research and Professor of Pediatrics and Molecular
Medicine at the Hofstra North Shore – LIJ School of Medicine. Dr. Lipton
holds a B.A. from Queens College, City University of New York. He received a
PhD degree in Chemistry in 1972 from Syracuse University and his MD degree,
magna cum laude in 1975, from Saint Louis University Medical School. He did
his Pediatric training at the Children’s Hospital, Boston, MA and his Pediatric
Hematology/Oncology fellowship training at the Children’s Hospital and the
Dana Farber Cancer Institute in Boston. Dr. Lipton’s interests focus on the rare inherited bone
marrow failure syndromes. His current work is devoted to understanding the genetics, cellular
and molecular biology of Diamond Blackfan anemia (DBA) and malignant predisposition and birth
defects observed in patients with DBA.
Amy Shapiro MD is Medical Director of the Indiana Hemophilia and Thrombosis Center (IHTC) and
Adjunct Professor of Pediatrics at Michigan State University. She co-founded the IHTC in 1999, now
one of the largest federally funded hemophilia treatment centers in the United
States. She has been appointed to the National Hemophilia Foundation’s
Medical and Scientific Advisory Council and is active on the National Institutes
of Health Clinical Trial Review Board, and Data and Safety Monitoring Board for
Transfusion Medicine and Hemostasis. Dr. Shapiro received her medical
degree at New York University School of Medicine, and completed her pediatric
internship, residency and fellowship in pediatric hematology/oncology at the
University of Colorado Health Sciences Center. Before taking up her current
position, she was Associate Professor of Pediatrics at the Indiana University
School of Medicine. Dr. Shapiro is active in studies to improve the treatment and outcomes for
people with bleeding disorders and has received numerous awards for her work including the
W George Pinnell Award for Outstanding Service from Indiana University, and the Distinguished
Hoosier Award in 2009 from the State of Indiana. In 2001, she was voted the National Hemophilia
Foundation Physician of the Year. She has also authored or co-authored over 200 articles and
abstracts and 13 textbook chapters.

PLENARY SPEAKERS
Marie Faughnan MD, MSc is a pulmonologist and clinician investigator, with a special interest in
pulmonary vascular malformations and Hereditary Hemorrhagic Telangiectasia (HHT). Dr. Faughnan’s
degrees include an MD from Université de Montréal and an MSc in Clinical
Epidemiology from the University of Toronto. She is the Director of the Toronto
HHT Program at St. Michael’s Hospital (University of Toronto) and the Montreal
HHT Program (Université de Montréal). Dr. Faughnan is the past Chair of the
HHT Foundation International’s Global Research and Medical Advisory Board and
is the current Chair of the HHT Foundation’s Research Funding Program. She
also led the development and publication of the first International HHT
Guidelines. Dr. Faughnan currently leads a number of HHT studies, including the
HHT Project of the NIH ORD/NINDS Rare Disease Clinical Research Consortium
on Brain Vascular Malformations. She is also collaborating locally, nationally and internationally in HHT
clinical, basic and translational research.
Rashmi Gopal-Srivastava, Ph.D. is Director of Extramural Research Program in the Office of Rare
Diseases Research at the National Institutes of Health (NIH). She oversees the program on Rare
Diseases Clinical Research Network (RDCRN). The RDCRN consists of 19 consortia and one Data
Management Coordinating Center. She is responsible for developing and
expanding the extramural research program to coordinate research activities on
rare diseases across NIH in collaboration with other Federal Agencies, patient
advocates, and other organizations. Prior to her current position she served as
the program director for breast cancer SPOREs (Specialized program of
Research Excellence) in the Office of Director, National Cancer Institute (NCI).
Dr. Gopal-Srivastava received her Ph.D. in Microbiology and Immunology from
the Medical College of Virginia, Virginia Commonwealth University, Richmond,
Virginia in 1989 and received a Virginia Commonwealth fellowship. The same
year she was selected and awarded a Research Associate ship from the US National Research Council
of the National Academies Science, and joined the Laboratory of Molecular and Developmental Biology
at the National Eye Institute, NIH and conducted research on regulation of gene expression for alphaB-
cystallin (small heat shock protein). She has published several papers in peer-reviewed journals,
written book chapters and delivered invited oral presentations nationally and internationally.
PLENARY SPEAKERS
Luncheon Plenary 12:00-1:30 PM
JoAnn M. Thierry, MS, MSW, PhD serves as the Prevention Research Team Leader for the Division
of Blood Disorders. Over the past four years, she has served as a Scientific Program Official for
NCBDDD, NCIPC, and NIOSH sponsored research programs. Prior to working in Extramural Research,
she served as a Behavioral Scientist with NCBDDD in the Disability and Health
Program where she was responsible for coordinating health and wellness
activities for women with disabilities and providing technical assistance to State
Health Departments and research projects focusing on health promotion and the
prevention of secondary conditions. Dr. Thierry has been working with people
with disabilities for more than twenty-five years. After earning her degree in
Psychology at the State University of New York (SUNY), College at Oswego, she
completed a Master’s degree in Counseling and Psychological Services at the
same institution, as well as a Master’s degree in Social work at Syracuse
University. Dr. Thierry obtained her Ph.D. in Social Work at the University of Georgia. She joined the
CDC in 1991 after working for several years for the Onondaga County Health Department in Syracuse,
New York. Her research interests include health promotion, disability, access to care, and women’s
health with special emphasis on women with disabilities.
Kimberly Haugstad, MBA is the Executive Director for Hemophilia Federation of America and brings
a commitment to collaboration and results in building individual strengths and community based
advocacy. Since joining HFA, she has been strategically focused on developing the organization to meet
today’s bleeding disorders community needs. In 2008, Ms. Haugstad relocated
HFA’s main office back to Washington DC and increased public policy and
advocacy efforts, coinciding with the Patient Protection and Affordable Care
Act’s development and passage into law. During her time at HFA, Ms. Haugstad
has grown and developed staff and volunteer teams who have improved and
increased visibility of HFA programs and services as well as created measurable
and positive outcomes for people with bleeding disorders. Prior to joining the
HFA, Ms. Haugstad spent more than 15 years in a variety of corporate
management and consulting roles building and developing people and
organizations. Her volunteer leadership history includes service on several boards and advocacy
committees both locally and nationally with the National Hemophilia Foundation’s Public Policy
Working Group and the Committee of Ten Thousand’s Government Relations Working Group. As an
advocacy chair, Ms. Haugstad helped draft the initial versions of what would become NHF’s MASAC
188, Standards of Service. Ms. Haugstad earned her undergraduate and master’s degrees via the
University of Wisconsin system and Thames Valley University in London, England. She has two young
children, one with severe hemophilia.

PLENARY SPEAKERS
Richard Pezzillo is the Communications Manager for the Hemophilia Federation of America. Prior to
joining HFA, Mr. Pezzillo was the Deputy Press Secretary for Senator Sheldon Whitehouse of Rhode
Island. Mr. Pezzillo has hemophilia and over 10 years of leadership experience
working with the bleeding disorders community, supported by strong skills in
advocacy, public relations and education. He is the former co-chair of the
National Hemophilia Foundation’s (NHF) National Youth Leadership Institute
(NYLI) and is the recipient of the Ryan White Meritorious Service Award. He has
also worked at several camps for children with bleeding disorders in Michigan,
California, Connecticut and New Hampshire and speaks regularly at local and
national annual meetings. Mr. Pezzillo earned his BS in 2008 at Western
Connecticut State University and currently resides in Washington, DC.
Corey Dubin is the President of the Committee of Ten Thousand, a policy and advocacy organization
serving the HIV and HCV infected hemophilia community. Mr. Dubin is a person with hemophilia, HIV,
and HCV. He is a fifty-six year old survivor who has three daughters and seven
grandchildren. An investigative radio and print journalist since 1976, Mr. Dubin
served as News and Public Affairs Director for KPFK, Pacifica Radio in Los
Angeles, during the first half of the 1980s. He also served as Program Director for
the station from 2000 to 2004. He continues to produce on-air programming for
KPFK and other non-commercial radio stations in the US. In response to the
exploding AIDS/Blood epidemic in the hemophilia community, Dubin joined the
Committee of Ten Thousand in 1992. COTT rapidly grew as the voice of the HIV
infected hemophilia community. From 1995 to 1999 he served two terms as the
first grass-roots consumer to sit on the FDA, Blood Products Advisory Committee. He continues to
serve as COTT’s president, a volunteer position he has held since 1997.
PLENARY SPEAKERS
Wednesday, March 14, 2012

Plenary III: Blood Disorders In Women: Challenges Across The Lifespan
8:00-9:30 AM
Andra James MD is a specialist in maternal-fetal medicine at Duke University where she is Associate
Professor of Obstetrics & Gynecology, Associate Professor of Medicine and Director of
the Women’s Hemostasis and Thrombosis Clinic. Her practice, clinical research and publications pertain
to reproductive issues in women with blood disorders. This past year Dr. James
has served as a special advisor on women’s issues to the Director, Division of
Blood Diseases and Resources, National Heart, Lung, and Blood Institute. She
has been active in national and international organizations to promote education
and research regarding blood disorders. She is the President of the Foundation
for Women and Girls with Blood Disorders, an organization dedicated to
educating health professionals about the unique needs of females with blood
disorders. Dr. James is a past chair of the International Society on Haemostasis
and Thrombosis - Women’s Issues Subcommittee and a current co-chair. She is a
member of the board of directors of the Hemophilia and Thrombophilia Research Society. She also
serves on the Medical and Scientific Advisory Board of the National Blood Clot Alliance, the Medical
Advisory Committee for the Platelet Disorders Support Association and the Medical and Scientific
Advisory Committee of the National Hemophilia Foundation.
Ruth Ann Kirschman WHNP-BC, MS is a nationally certified Women’s Health Nurse Practitioner for
the past 30 years. She has practiced in public health settings and private practices. She is currently the
Clinical Manager and Nurse Practitioner at the Center for Women’s Health in
Colorado which is a large women’s health practice known for their care of women
by women. Previously she was employed by the Mountain States Regional
Hemophilia and Thrombosis Center as a nurse practitioner/research associate for
persons with bleeding and clotting disorders. Ms. Kirschman is a member of the
national Women with Bleeding Disorders Task Force for the National Hemophilia
Foundation, which provides input to the NHF chapters and hemophilia treatment
centers on women’s issues related to bleeding disorders and continues to build
the NHF Victory for Women program. Further in the area of women’s health, Ms.
Kirschman serves as immediate past chairman of the board of the Lupus Foundation of Colorado,
another area of health concern for women. Ms. Kirschman’s interests are running and fly fishing.

PLENARY SPEAKERS
Stephan Moll MD is Associate Professor of Medicine in the Division of Hematology-Oncology at the

University of North Carolina (UNC), Chapel Hill. After receiving a medical degree from Freiburg
University in Germany and serving a residency at the Institute of Pathology, University of Aachen,
Germany, Dr. Moll completed an internship/residency in internal medicine and a
hematology-oncology fellowship at Duke University Medical Center, Durham,
North Carolina, and a 1-year clinical coagulation fellowship at UNC. His
postgraduate career further included a position in clinical coagulation in the
cardiology division of Humboldt University in Berlin, Germany. Dr. Moll’s clinical
focus is coagulation, particularly thrombosis and thrombophilia and
anticoagulation. His research interests include clinical trials on antiphospholipid
antibody syndrome, postthrombotic syndrome, and new anticoagulants.
Dr. Moll is a board member of the national non-profit anticoagulation provider
organization AC-Forum (Anticoagulation Forum; www.acforum.org) and the Hemophilia and
Thrombosis Research Society (HTRS; www.htrs.org). He recently started the not-for-profit UNC
Blood Clot Education outreach project Clot Connect (www.clotconnect.org), an education/information
tool for patients and health care professionals about clinical-practical thrombosis, thrombophilia,
and anticoagulation issue.
Lanetta Jordan MD, MPH, MSPH is the Director of the Department of Sickle Cell Services at
Memorial Healthcare System in Hollywood, Florida, a position she has held since founding that
department in 2004. As Director, she heads activities which focus on adolescent and adult acute pain
care, comprehensive follow-up care, research and grants, community outreach education, genetic
counseling and screening, and an adolescent transition program. In 2004, Dr. Jordan spearheaded the
successful Joint Commission Disease Specific Certification of Distinction for Sickle Cell Disease at
Memorial Regional Hospital. In addition, Dr. Jordan is also the Chief Medical
Officer of the Sickle Cell Disease Association of America, a position to which she
was appointed in 2008. Dr. Jordan was appointed to the state of Florida’s Health
Care Transition Task Force for Youth and Young Adults with Disabilities 2009 and
remains actively involved in developing a system for transition of care for all
youth and young adults with disabilities in Floridia. She is also an Adjunct
Professor at Barry University in Miami, Florida and co-author of various articles,
abstracts and policy briefs. Dr. Jordan was recently appointed to serve on the
National Heart, Lung, and Blood Advisory Council, National Institutes of Health.
Dr. Jordan completed a Doctor of Medicine Dual Degree Program, receiving her M.D. degree from the
University of North Carolina at Chapel Hill School of Medicine and Master of Public Health degree in
Health Policy and Administration. Her clinical training is in adult psychiatry. She also has a Master of
Science in Public Health in Medical Parasitology and Laboratory Practice. Her Master’s research focus
was on antigenic variation in African Trypanosomiasis and the epidemiology of Sickle Cell Disease and
Malaria in Sub-Saharan Africa.
PLENARY SPEAKERS
Closing Plenary: The Future of the Blood Disorders Workforce 10:00-11:30 AM
Bruce Evatt MD received his medical degree from the University of Oklahoma, and has served as an
Investigator at Howard Hughes Medical Center, an Assistant Professor of Medicine, a Chief Resident of
Medicine, and a Senior Resident of Medicine. As a hematologist interested in
blood coagulation-associated diseases, Dr. Evatt has worked with hemophilia and
thrombotic disorders since 1965, first at the Johns Hopkins Hospital in Baltimore
and then the Centers for Disease Control in Atlanta beginning in 1976, when he
established a national laboratory in hemostasis. He also served as a volunteer and
Board of Directors member for Hemophilia of Georgia until the late 1980’s. His
major accomplishments include identifying AIDS as a blood-borne disease
affecting persons with hemophilia and blood-transfusion recipients,
demonstrating that heat-treatment of clotting factor concentrates inactivates
HIV, and identifying a new class of congenital clotting disorders, protein C deficiency. He has authored
or co-authored more than 250 scientific or review articles. He retired in 2004 but continues to do
international volunteer work with the World Federation of Hemophilia.
Lawrence A. Solberg, Jr. Ph.D., M.D. is a hematologist in the Division of Hematology-Oncology at

the Mayo Clinic in Florida. He is a Professor of Medicine in the College of Medicine, Mayo Clinic, and
serves as Vice-Chair, Research Operations Management Team, and Chair, Clinical Research
Subcommittee of the Mayo Clinic in Florida. He is President of the Mayo Clinic
in Florida Officers and Councilors for 2011. He received an AB in Biological
Sciences in 1966 and a PhD in Physiology in 1971 from the University of
California at Berkeley and an MD, summa cum laude, from St Louis University in
1975. From 1975 to 1978 he trained in Internal Medicine at the Mayo Graduate
School of Medicine and from 1978 to 1980 as a Hematology fellow at the Mayo
Clinic in Rochester, Minnesota. He served from 1980 to 1982 in the United States
Air Force Medical Corps stationed at Wright-Patterson AFB, Ohio. Dr. Solberg
has been on the staff of the Mayo Clinic since 1982- in Rochester MN through
1991 and in Florida from 1991 through the present. He has served as Chair, Division of Hematology
Oncology, Mayo Clinic Florida, 1991-2001. Dr. Solberg’s service outside Mayo Clinic has included
Chair, Community Hospice of Northeast Florida- a non-profit hospice that provides daily care for
1000 patients in 5 counties in NE Florida including 75-100 children, from 2004-2010. He is also the
immediate past Chair of the Practice Committee of the American Society of Hematology (ASH)
(2008-2011). He has served ASH in several positions related to manpower and quality of care issues
including service as the ASH representative to AMA Physician Consortium for Performance
Improvement, on the Task Force on Recruitment and Retention (TFRR), and as Chair of an
ASH Hematologist Hospitalist Work Group.

PLENARY SPEAKERS
George R. Buchanan MD is Professor of Pediatrics at The University of Texas Southwestern Medical

Center at Dallas (UT Southwestern) and in the Center for Cancer and Blood Disorders at Children’s
Medical Center in Dallas. He holds the endowed Children’s Cancer Fund Distinguished Chair in
Pediatric Oncology and Hematology. Dr. Buchanan received his M.D. degree at
the University of Chicago and was a resident in pediatrics at Children’s Memorial
Hospital in Chicago. He received pediatric hematology-oncology training at
Children’s Hospital and Dana Farber Cancer Institute in Boston. He has been in
Dallas since 1977. His clinical and research interests in sickle cell disease, other
anemias, ITP, and bleeding disorders have resulted in over 290 publications. He
has served as Chair of the Subboard of the American Board of Pediatrics and as
President of the American Society of Pediatric Hematology/Oncology (ASPHO).
In 2007 he was the recipient of the ASPHO Distinguished Career Award. He
chaired the Nominating Committee and was twice a member of the Executive Committee of the
American Society of Hematology (ASH). In December 2008 he received the ASH Mentor Award for
Clinical Research. He has chaired or otherwise been involved in a number of National Institutes of
Health-sponsored advisory panels, workshops, and task forces. In March 2010 he gave the distinguished
UT Southwestern President’s Lecture entitled “Sickle Cell Disease: One Hundred Years of Progress,”
and in November 2010 he was the recipient of the Arnold P. Gold Foundation Humanism in Medicine
Award from the American Association of Medical Colleges.
Donna DiMichele, MD is currently serving as the Deputy Director of the Division of Blood Diseases
and Resources (DBDR) at the National Heart Lung and Blood Institute (NHLBI) while maintaining an
appointment in the Department of Pediatrics at the Weill Cornell Medical College. In her position at the
NHLBI, Dr. DiMichele has begun to explore the potential research areas in hematology, cardiology, and
pulmonology, of interest to both the NHLBI and the Eunice Kennedy Shriver National Institute of Child
Health and Human Development. Within this framework, she is particularly
interested in exploring the potential for NIH-wide collaboration to generate
Small Business Innovation Research/Small Business Technology Transfer
opportunities in the development of devices, pediatric-specific metrics, and
microfluidic assays required to further neonatal and pediatric research in lung,
heart, and blood diseases. Dr. DiMichele continues to seek opportunities where
the NHLBI can facilitate multicenter clinical trials, which builds upon her
interests in pediatric and rare blood diseases research as well as clinical trials in
blood diseases. Dr. DiMichele received her medical education at McGill
University in Montreal, Canada. Her research interests and publications have focused on inhibitor
epidemiology and immune tolerance; severe hemophilia in females; rare bleeding disorders and the
ethics of high risk research in children with hemophilia. She has previously served as co-PI of the
International Immune Tolerance Study; co-chair of the UDC Working Party on Rare Bleeding and
Clotting Disorders (charged with the responsibility of developing a national database on rare plasma
protein disorders); and the PI of both the US and International Severe Hemophilia in Females studies.
She joined the NIH in January, 2010.
PLENARY SPEAKERS
Judith Baker MHSA is currently the Administrative Director of the Federal Hemophilia Treatment
Centers (HTC)/Region IX where she provides strategic direction for initiatives to strengthen quality of
care, outcomes, and costs for genetic blood disorders populations in California, Hawaii, Nevada and the
US Pacific. Ms. Baker is a public health leader with extensive experience in improving systems of care
for people with rare or under recognized inherited chronic disorders. Her work to strengthen the
non-physician workforce includes creating the Tri-regional Advance Practice Seminar series for the
three west coast hemophilia regions, “Hemophilia 101” workshops for the
California’s Department of Health Services, and 340B technical assistance
seminars. To improve access to care, she led the development of the first ever
HTCs in Nevada, Hawaii, and Guam. Ms. Baker serves on work groups and
advisory committees of the CDC, FDA, the National Hemophilia Foundation, and
the American Thrombosis and Hemostasis Network. She has lectured and
published on the U.S. regional model of hemophilia care, women’s bleeding
disorders, and health outcomes; is executive producer of Blood Roots, a
documentary which chronicles pioneers of comprehensive hemophilia care in the
Western US; and received the National Hemophilia Foundations’ Meritorious Service Award. Ms. Baker
is a doctoral student of Health Services at UCLA’s School of Public Health and obtained a Master of
Health Services Administration degree from the University.

AGENDA AT A GLANCE
Agenda at a Glance
Day 1, Monday, March 12, 2012
7:00 AM – 8:30 AM Registration, Breakfast;
Round Tables; Meet The Expert Prefunction Area
8:30 AM – 9:00 AM Welcome and Brief Updates:
Federal Partners and Local Host Grand Ballroom
9:00 AM - 10:30 AM Opening Plenary:
Translating Science Into Action Grand Ballroom
10:30AM – 11:00 AM Networking Break Prefunction Area
11:00 AM – 12:30 PM Breakout Sessions I (BS1 to BS5)
BS1 Raising Awareness of Deep Vein Thrombosis and
Pulmonary Embolism Kern/Porter
BS2 Frontline Perspectives Around Blood Disorders Berlin/Copeland
BS3 Pediatric Thrombosis: Bernstein Ballroom
A Growing Public Health Issue (lobby level/2nd floor)
BS4 Hemoglobinopathy Screening Concourse North
BS5 Inhibitors in Hemophilia Concourse South
12:30 PM – 2:00 PM Luncheon Plenary Grand Ballroom

2:00 PM – 3:30 PM Breakout Session II (BS6 to BS10)
BS6 Health Education, Health Promotion, and
Health Communication for People with Blood Disorders Kern/Porter
BS7 Venous Thromboembolism —
Complications And Risk Factors Berlin/Copeland
BS8 Hemoglobinopathy Complications Bernstein Ballroom
(lobby level/2nd floor)
BS9 Social Studies In Hemoglobinopathies Concourse North
BS10 Best Public Health Practices in Working with a Rare Disorder Concourse South
3:30 PM – 4:00 PM Networking Break Prefunction Area

4:00 PM – 5:00 PM Special Sessions A (SS1 to SS5)
SS1 Sickle Cell Disease and Vaccines Kern/Porter
SS2 Assessing and Facilitating the Use of Genetic Testing for
Rare Blood Disorders Berlin/Copeland
SS3 Pediatric Issues In Blood Disorders Bernstein Ballroom
(lobby level/ 2nd floor)
SS4 Population-based Research on Venous Thromboembolism in
Norway: Implications for the United States Concourse North
SS5 Blood Safety Concourse South

5:30 PM – 8:00 PM Posters / Reception Prefunction Area
AGENDA AT A GLANCE
Day 2, Tuesday, March 13, 2012

8:30 AM – 10:00 AM Plenary ll: Public Health Approaches To Increasing
The Recognition Of Rare Blood Disorders Grand Ballroom
10:00 AM – 10:30 AM Networking Break Prefunction Area
10:30AM – 12:00 PM Breakout Sessions III (BS11 to BS15)
BS11 Technology Approaches to Provider and Patient Education for
Deep Vein Thrombosis and Pulmonary Embolism Kern/Porter
BS12 Adherence To Prophylaxis/Treatment In Blood Disorders Berlin/Copeland
BS13 The Promises and Limitations of Molecular Technology in
Blood and other Rare Disorders Bernstein Ballroom
BS14 Use of Administrative Data for Surveillance of
Under-Recognized Blood Disorders Concourse North
BS15 Screening of Educational Videos Concourse South
12:00 PM – 1:30 PM Luncheon Plenary Grand Ballroom

1:30 PM – 3:00 PM Breakout Session IV (BS16 to BS20)
BS16 Hemoglobinopathy Initiatives Kern/Porter
BS17 Identifying Information Needs Among Children and
Teens Living with Hemophilia Berlin/Copeland
BS18 Strategy and Implementation of Surveillance and Research
Registries for the Bleeding Disorders Community Bernstein Ballroom
BS19 Morbidity and Mortality of Venous Thromboembolism Concourse North
BS20 Iron Out of Balance Concourse South

3:30 PM – 4:25 PM Special Sessions B (SS6 to SS10)
SS6 Effectiveness of Hydroxyurea in Children with
Sickle Cell Disease Kern/Porter
SS7 Sickle Cell Disease: Epidemiology and Disease Burden
in Low-Income Countries Berlin/Copeland
SS8 Using Rare Disease Consortia to Integrate Health Resources
and Services and Research Bernstein Ballroom
SS9 Transition Issues Concourse North
SS10 Sickle Cell Carrier Screening Programs and
Clinical Implications Concourse South

AGENDA AT A GLANCE
4:25 PM – 4:35 PM Transition Break

4:35 PM – 5:30 PM Special Sessions C (SS11 to SS15)
SS11 Comprehensive Care for Sickle Cell
Immigrant Patients in Europe Kern/Porter
SS12 Promoting Partnerships Between Community-Based
Organizations and Health Care Providers to
Address Specific Health Problems Berlin/Copeland
SS13 Basic Principles of Consent in Research, Surveillance
and Patient Care Bernstein Ballroom
SS14 Females with Bleeding Disorders: Role of Primary Care Concourse North
SS15 Telemedicine and Telehealth:
Innovative Tools for Addressing Public Health Challenges
and Access to Care Concourse South
Day 3, Wednesday, March 14, 2012

8:00 AM - 9:30 AM Plenary III: Blood Disorders In Women:
Challenges Across The Lifespan Grand Ballroom
9:30 AM – 10:00 AM Networking Break Prefunction Area
10:00 AM – 11:30 AM Closing Plenary: The Future of the
Blood Disorders Workforce Grand Ballroom
11:30 AM – 12:00 PM Closing Session: Public Health Leadership
in Blood Disorders Grand Ballroom
Day 4, Thursday, March 15, 2012

The Conference of the
Global Sickle Cell Disease Network
Day 5, Friday, March 16, 2012

Sickle Cell and Thalassaemia:
Global Public Health Issues Come of Age:
The 2nd WISSH CONFERENCE
(World-wide Initiative on the Social Study of Haemoglobinopathies)
EXPANDED AGENDA
Expanded Agenda

7:00 AM – 8:30 AM Registration, Breakfast; Round Tables; Meet The Expert
Location: Prefunction Area
8:30 AM – 9:00 AM Welcome and Brief Updates: Federal Partners and Local Host
Location: Grand Ballroom
Moderator: Hani Atrash MD, MPH
• National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and
Prevention: Coleen Boyle PhD, MSHyg
• Health Resources and Services Administration: Lorraine Brown RN, BS, CPHP
• National Heart Lung and Blood Institute: W. Keith Hoots MD
• Hemophilia of Georgia: Trish Dominic CEO
9:00 AM – 10:30 AM Opening Plenary: Translating Science Into Action

Moderator: Wanda Barfield MD, MPH, FAAP
• Factor prophylaxis in young patients with severe hemophilia to prevent joint disease. Craig Kessler MD
• Hospital prophylaxis for VTE prevention. Jason Stein MD, SFHM
• Hydroxurea in patients with SCD to prevent crises. Sophie Lanzkron MD, MHS
10:30AM – 11:00 AM Networking Break


BS1 Raising Awareness of Deep Vein Thrombosis and Pulmonary Embolism
Location: Kern/Porter
Moderator: Cynthia Sayers BA
BS1-1: Increasing Women’s Awareness of DVT-PE: This Is Serious Campaign.
Suman Rathbun, MD, MS
BS1-2: Utilization of Web-Based Outreach Tools to Provide Information on VTE: The Clot Connect
Project. Stephan Moll MD; Beth Waldron MA
BS1-3: Deep Vein Thrombosis and Pulmonary Embolism: Awareness and Prophylaxis Practices
Reported by Patients with Cancer. Frederick R. Rickles MD; Alan Brownstein MPH; Greg
Maynard MD, MSc, SFHM; Elizabeth Varga MS, CGC; Richard Friedman MD, FRCSC;
Jack Ansell MD
Reported by Recently Hospitalized Patients. Greg Maynard, MD, MSc, SFHM; Alan Brownstein
MPH; Jack Ansell MD; Elizabeth Varga MS, CGC; Richard Friedman MD, FRCSC

EXPANDED AGENDA
BS2 Frontline Perspectives Around Blood Disorders

Location: Berlin/Copeland
Moderator: Gilberto Chavez MD
BS2-1: A National Infrastructure for Rare Blood Disorders: An Evaluation of Staffing, Training and
Services. Ann Forsberg MA, MPH; Suzanne Kapica MA, LPC; Judy Primeaux MA
BS2-2: Cancer Surveillance Defines Diamond Blackfan Anemia (DBA) As a Cancer Predisposition
Syndrome. Adrianna Vlachos, MD; Philip S. Rosenberg PhD; Eva Atsidaftos MA; Blanche P.
Alter MD, MPH; Jeffrey M. Lipton MD, PhD
BS2-3: Transitioning the Diamond Blackfan Anemia Patient From Pediatric to Adult Care. Johnson
Liu MD; Ellen Muir BS, MA; Adrianna Vlachos MD; Sandeep Jauhar MD; Yael Harris MD; Irwin
Klein MD; Jeffrey M. Lipton MD, PhD
BS2-4: Strategies For Teaching Pain Management In The Form Of Workshop To The Parents/Patients
In Sickle Cell Disease. Melanie Kirby-Allen MD; Fiona Campbell MD; Khush Amaria PhD, C.
Psych; Anne Ayling Campos BSc; Michael Jeavons MD; Nagina Parmar PhD;
Melina Cheong RN(EC)
BS3 Pediatric Thrombosis: A Growing Public Health Issue

Location: Bernstein Ballroom (lobby level/2nd floor)
Moderator: Marilyn Manco-Johnson MD
BS3-1: Inferior Vena Cava Thrombosis in Children: Prevalence and Risk for the Post Thrombotic
Syndrome. Marilyn Manco-Johnson MD; Michele Beckman MPH; Rhonda Knapp-Clevenger PhD;
Courtney Thornburg MD, MS; Roshni Kulkarni MD; Steven Pipe MD; Vilmarie Rodriquez MD;
Judith Anderson MD; John Heit MD; Stephan Moll MD; Thomas Ortel MD, PhD; Claire Philipp
MD
BS3-2: Trends in Venous Thromboembolism-Associated Hospitalizations Among U.S. Children, 1994-
2008. Sheree Boulet DrPH; Scott D. Grosse PhD; Courtney Thornburg MD, MS; Hussain Yusuf
MD, MPH; James Tsai MD, MPH; W. Craig Hooper PhD
BS3-3: Current Status on the Epidemiology of Thrombosis in Children. Bryce A. Kerlin, MD
BS3-4: Novel Strategies for National Surveillance of Pediatric Thrombosis. Marilyn Manco-Johnson MD
BS3-5: Health Outcomes Research in Pediatric Thrombosis: Strategies for Treatment and Prevention.
Courtney Thornburg MD, MS
BS4 Hemoglobinopathy Screening

Location: Concourse North
Moderator: Jelili Ojodu MPH
BS4-1: Estimates of the Birth Prevalence of Sickle Cell Disease in African Populations: Implications
for Newborn Screening Programs in Africa and the United States. Scott D. Grosse PhD;
Thomas N. Williams MD, MPH; Djesika Amendah PhD; Frederic B. Piel PhD
BS4-2: Incidence Of Sickle Cell Diesease Among Newborns In New York By Maternal Race/Ethnicity
And Nativity–A Population-Based Study. Ying Wang PhD, MPH; Joseph Kennedy MPH;
Regina Zimmerman PhD; Sanil Thomas MS; John Berninger BS; Michele Caggana ScD; Scott
Grosse PhD
BS4-3: Burden of Sickle Cell Disease, Alpha-Thalassemia and Glucose-6-Phosphate Dehydrogenase
Deficiency Among Children in Western Kenya. Parminder Suchdev MD, MPH; Laird Ruth MPH;
Marie Early PhD; Alex Macharia; Thomas Williams MD, MPH
EXPANDED AGENDA
BS4-4: Longitudinal Data Support the Utility of Newborn Screening for Alpha Thalassemia.
Ashutosh Lal MD; Carolyn Hoppe MD; Sylvia Titi Singer MD; Elliott Vichinsky MD
BS5 Inhibitors in Hemophilia

Location: Concourse South
Moderator: Michele Beckman MPH
BS5-1: UDC Inhibitor Pilot Study: A Review. Fiona M. Kelly MPH; J. Michael Soucie PhD; Connie H.
Miller PhD
BS5-2: Infused Treatment Product Utilization Trends for Hemophilia A and B Patients in the UDC
Inhibitor Study. Fiona M. Kelly MPH; J. Michael Soucie PhD; Connie H. Miller PhD; Sheree
Boulet DrPH, MPH
BS5-3: Association of Immune Response Gene Polymorphisms with Inhibitors in Hemophilia Patients.
Amanda Payne MPH; Connie Miller PhD; Christopher Bean PhD; Meredith Pyle MS; Craig
Hooper PhD
BS5-4: The CDC Hemophilia A Mutation Project (CHAMP) F8 Mutation List: A New Online Resource.
Connie Miller PhD; Amanda Payne MPH; Fiona Kelly MPH; J. Michael Soucie PhD; Craig
Hooper PhD
BS5-5: Evaluation of a Fluorescence-Based Immunoassay to Detect Anti-Factor VIII Antibodies in
Patients with Hemophilia A. Brian Boylan MS; Connie Miller PhD; Craig Hooper PhD
12:30 PM – 2:00 PM Luncheon Plenary

Moderator: Christopher Parker PhD, MPH
Implementation Research: Closing the Gap Between What is Known and What is Done. David Chambers D Phil

BS6 Health Education, Health Promotion, and Health Communication for
People with Blood Disorder
Moderator: Vanessa Byams MPH
BS6-1: Building a Provider Organization for the Technological Age: Improving Lives of Women with
Blood Disorders. Evelyn Lockhart MD; Ann-Marie Nazzaro PhD; Lauren Daitch MPH
BS6-2: Young Women and Bleeding Disorders: Increasing Awareness. Patricia Rhynders PhD, MPH,
CHES; Fred Fridinger DrPH, CHES; Cynthia Sayers BA; Patrice Flax MS, MSW; Michele
Salomon JD; Sally McAlister BSN; Kathleen Roach MPH, MBA
BS6-3: FitFactor – Providing Physical Activity and Nutrition Education Online. Faith Hunter MBA,
ERYT; Gretchen Simmons MPH, MCHES; Michelle Burg BBA; Kimberly Haugstad MBA
BS6-4: Bridging the Cultural Divide: Development of Steps for Living, An Online Life Stages
Education Program. Ayana Woods MPH; Jennifer Crawford MPH, Gretchen Simmons MPH,
MCHES; Cynthia Sayers BA
BS6-5: On Line Education Program Designed for Specific Life Stages. Chad Feay BA; Jennifer Crawford
MPH; Gretchen Simmons MPH, MCHES; Cynthia Sayers BA

EXPANDED AGENDA
BS7 Venous Thromboembolism – Complications And Risk Factors

Moderator: Craig Hooper PhD
BS7-1: Bleeding and Thrombotic Complications Associated with CYP2C9 and VKORC1 Polymorphisms
Among Blacks on Warfarin Therapy. Fatima D. Mili MD, PhD; Tenecia A. Deans MD; Craig
Hooper PhD; Paula M. Weinstein MD; Cathy Lally MSPH; Harland Austin DSc; Nanette K.
Wenger MD
BS7-2: Characteristics of Cancer Associated Venous Thromboembolism in the Multicenter CDC
Thrombosis Network Registry. Imran Khan MD/PhD; Ambarina Faiz MD, PhD; Michele
Beckman MPH; Kristy Kenney MPH; Paula Bockenstedt MD; John Heit MD; Roshni Kulkarni
MD; Marilyn Manco-Johnson MD; Stephan Moll MD; Thomas Ortel MD, PhD; Claire Philipp MD
BS7-3: Is Polycystic Ovary Syndrome a Risk Factor for Venous Thromboembolism?
Ekwutosi Okoroh, MD
BS7-4: Prevalence of Bleeding in Thrombophilia Patients with Pulmonary Embolism. Jimmy C. Liu MD;
Charity G. Moore PhD, MSPH; Diane M. Comer BA; Margaret V. Ragni MD, MPH
BS7-5: Trends in Venous Thromboembolism Among Pregnancy Hospitalizations in the U.S., 1994-2008.
Nafisa Ghaji MBBS, MPH
BS8 Hemoglobinopathy Complications

Moderator: James Eckman MD
BS8-1: Sickle Cell Disease in Pregnancy: Maternal and Fetal Outcomes in a Medicaid-Enrolled
Population. Sheree Boulet DrPH; Ekwutosi Okoroh MD; Althea Grant PhD; Ijeoma Azonobi MD;
Craig Hooper PhD
BS8-2: Preoperative Transfusion Practices and Outcomes in Sickle Cell Patients Admitted to
California Hospitals. Susan Claster MD; Sheree Schrager MS, PhD; Vanessa Guzman BA; Julie
Wolfson MD, MSHS; Ellen Iverson MPH
BS8-3: Healthcare Utilization and Treatment of Priapism in SCD and non-SCD patients. Ashish O.
Gupta MD, MPH; Marike Vuga PhD; Lakshmanan Krishnamurti MD
BS8-4: Transfusion Related Complications in Patients with Thalassemia. Suchitra Sundaram MBBS;
Ruchika Goel MD, MPH; Lakshmanan Krishnamurti MD
BS8-5: Clinical Predictors Of All-Cause In-Hospital Mortality In Patients With Sickle Cell Disease in
United States- First Reported Results From A Nationally Representative Sample. Ruchika Goel
MD, MPH; Ashish Gupta MD; Lakshmanan Krishnamurti MD
BS9 Social Studies In Hemoglobinopathies

Moderator: Joseph Telfair DrPH, MSW, MPH
BS9-1: Social Science and Sickle Cell/Thalassaemia: Three Conceptual Models. Simon Dyson PhD
BS9-2: Disparities in Sickle Cell Disease Care: Disentangling the Roles of Race, Place, and Disease
State. Carlton Haywood PhD, MA; Rakhi Naik MD; Mary Catherine Beach MD, MPH; Sophie
Lanzkron MD, MHS
BS9-3: Profiling the Social and Behavioral Adherence Pathway in Thalassemia. Robert Yamashita PhD
BS9-4: Social Function and Risky Behaviours in Jamaican Adolescents with SCD. Monika Asnani
MBBS, DM; Komal Bhatt M.B.B.S; Marvin Reid PhD; Novie Younger PhD
EXPANDED AGENDA
BS10 Best Public Health Practices in Working with a Rare Disorder

Moderator: Julie Bolen PhD, MPH
BS10-1: Success in Revising ICD Codes for Thalassemia. Jeanne Boudreaux MD
BS10-2: Strategies for Using Social Media to Reach People Who Have a Rare Disorder. Craig Butler BFA,
MA
BS10-3: Understanding Adherence to Treatment From the Patient’s Perspective. Kathleen Durst LCSW
BS10-4: New Drug Approvals and the Role of Advocacy Organizations in Demonstrating Unmet Patient
Need. Gina M. Cioffi BA, JD
3:30 PM – 4:00 PM Networking Break


SS1 Sickle Cell Disease and vaccines
Moderator: Violanda Grigorescu MD, MSPH
SS1-1: Pneumococcal Conjugate Vaccines and Sickle Cell Disease Deaths: Cause-of-Death Data From
Rio De Janeiro, Brazil. Clarisse Lobo MD; Jane Hankins MD, MS; Scott Grosse PhD
SS1-2: Immunization Rates Among Michigan Children with Sickle Cell Disease Compared to Disease-
Free Controls. Mary Kleyn MSc; Violanda Grigorescu MD, MSPH; Rachel Potter DVM, MS;
Patricia Vranesich RN, BSN; Robin O’Neill MPH
SS1-3: Characteristics Associated with Not Completing the Pneumococcal Vaccine Series Among
Children with Sickle Cell Disease. Mary Kleyn MSc; Violanda Grigorescu MD, MSPH; Rachel
Potter DVM, MS; Patricia Vranesich RN, BSN; Robin O’Neill MPH; William Young PhD
SS2 Assessing and Facilitating the Use of Genetic Testing for Rare Blood Disorders
Moderator: Andra James MD
SS2-1: The Benefits of Genotyping Patients With Hemophilia in Order to Guide Management to
Reduce the Risk of Inhibitor Development. Donna DiMichele MD
SS2-2: Counseling Patients and Families Affected by Bleeding and Hemoglobin Disorders Regarding
Genetic Testing (Carrier Screening) of Family Members for Both Diagnosing Additional Cases
(Cascade Testing) and for Reproductive Planning. Kristin Nunez MS, CGC
SS2-3: Major Barriers to Genetic Testing for Rare Blood Disorders and Potential Solutions to
Overcome These Barriers, Using the Case of Hereditary Hemorrhagic Telangectasia (HHT) as
a Case Study. Reed Pyeritz MD, PhD
SS3 Pediatric Issues In Blood Disorders

Moderator: Len Valentino, MD, ABP
SS3-1: Hemophilia. Roshni Kulkarni MD
SS3-2: Sickle Cell Disease. Michael DeBaun MD, MPH
SS3-3: Diamond Blackfan Anemia. Jeffrey M. Lipton MD, PhD

EXPANDED AGENDA
SS4 Population-based Research on Venous Thromboembolism in Norway:

Implications for the United States
Moderator: Stephan Moll MD
SS4-1: Associations Between Life-style, Cardiovascular Risk Factors and Risk of Venous Thrombosis
- Lessons Learned From the Tromsø Study. John-Bjarne Hansen MD, PhD
SS4-2: Register Data and Population-based Health Surveys as Sources for Research on VTE — Past
and Future Opportunities. Finn Egil Skjeldestad MD, PhD
SS4-3: The Association of Incident VTE with Subsequent Receipt of a Disability Pension.
Ekwutosi Okoroh MD
SS5 Blood Safety

Moderator: Sean Trimble MPH
SS5-1: Blood Safety Surveillance of Heavily-transfused Thalassemia Patients. Ijeoma Azonobi MD
SS5-2: Continued Transmission of Parvovirus B19 in Plasma-Derived Factor Concentrates Despite
Plasma Minipool Screening. J. Michael Soucie PhD; Christine De Staercke PhD; Meera Chitlur
MD; Ralph Gruppo MD; Craig Hooper PhD; Craig Kessler MD; Roshni Kulkarni MD; Marilyn
Manco-Johnson MD; Paul Monahan MD; Meredith Oakley MPH; Jerry Powell MD; Meredith
Pyle MS; Michael Recht MD, PhD; Brenda Riske MS, MBA, MPA; Hernan Sabio MD; Sean
Trimble MPH
SS5-3: Rh Hemolytic Disease of the Newborn: A Major Public Health Problem.
Alvin Zipursky MD, FRCP; Vinod Paul MD, PhD

5:30 PM – 8:00 PM Posters / Reception

Posters
P-1: Antiphospholipid Syndrome in the Thrombosis Research and Prevention Network. Thomas Ortel
MD, PhD; Michele Beckman MPH; Claire Philipp MD; Stephan Moll MD; Marilyn Manco-Johnson
MD; John Heit MD; Paula Bockenstedt MD; Andra James MD
P-2: Baseline Evaluation of the Blood Brotherhood Program. Michelle Burg BBA; Lauren Neybert
LGSW; Gretchen Simmons MPH, MCHES; Kimberly Haugstad MBA
P-3: Burden of Illness: Direct and Indirect Costs Among Persons with Hemophilia A. Kathleen
Johnson PharmD, MPH, PhD; Zheng-Yi Zho MS; Marion Koerper MD; Brenda Riske MS, MBA, MPA;
Judith Baker MHSA; Megan Ullman MPH; Randall Curtis MBA; Jiat Poon; Mimi Lou MS
P-4: Development and Implementation of a Transition Timeline for Pediatric Patients with Sickle Cell
Disease. Melina Cheong RN(EC), MN; Geradline Cullen-Dean RN, MN; Navreet Gill RN, MN
P-5: Educational Opportunities for Hemoglobinopathies. Geetha Puthenveetil MD; Deborah Green BS;
Melissa Belvedere BSN; Mary Brown; Diane Nugent MD
P-6: Emergency Department Nurse Perception of Narcotic Use in Sickle Cell Vaso-Occlusive Crisis.
D’Etta Jenkins, RN, BC, DNP, MSM, CMC
EXPANDED AGENDA
P-7: Emergency Department Visits by People with Hemophilia: Rates and Reasons 2000-2009.
Azfar-E-Alam Siddiqi MD, PhD; Michele Beckman BA, MPH; Hussain Yusuf MD, MPH;
Rodney J. Presley PhD; Christopher Parker PhD, MPH
P-8: Literacy in Persons with Hemophilia B. Jiat-Ling Poon BSc; Mimi Lou MS; Zheng-Yi Zhou MS;
Megan Ullman MPH; Marion Koerper MD; Roshni Kulkarni MD; Kathy Parish PhD; Kathleen
Johnson PharmD
P-9: Healthcare Utilization, Characteristics and Costs for Thalassemia As Principal Diagnosis
for Hospitalization in the United States. Suchitra Sundaram MBBS; Ruchika Goel MD, MPH;
Lakshmanan Krishnamurti MD
P-10: Integration of a Pediatric Psychology Program in a Hemophilia Treatment Center.
Cathliyn Buranahirun PsyD; Sharon H. O’Neil PhD; Kathleen Ingman PhD
P-11: Intra-Abdominal Venous Thrombosis: Characteristics of Pediatric and Adult Patients. Daniel
Landi MD; Michele Beckman MPH; Nirmish Shah MD; Paula Bockenstedt MD; John Heit MD;
Roshni Kulkarni MD; Marilyn Manco-Johnson MD; Stephan Moll MD; Claire Philipp MD; Judith
Andersen MD; Thomas Ortel MD, PhD
P-12: National Survey of State Medical Assistance Programs: Variations in Eligibility, Coverage and
Hemophilia Care Standards. Robina Ingram-Rich BSN, MS, MPH; Judith Baker MHSA
P-13: Network Approaches to Enhancing Services for Sickle Cell Disease and Trait Education and
Counseling Programs. Lenee Simon MPH
P-14: Following Ankle Arthrodesis In Hemophilia: Analyses Using the Universal Data Collection
Surveillance Project. Heidi Lane PT, DPT, PCS; Azfar-E-Alam Siddiqi MD, PhD; Robina Ingram-Rich
BSN, MS, MPH; Patricia Tobase PT, DPT, OCS; R.Scott Ward PT, PhD
P-15: Redefining School Curricula to Manage Blood Disorders. Pushkar Aggarwal 2nd, Lt, (CAP)
P-16: Sickle Cell Anemia Mortality Trends in Georgia, 1994-2008. Thomas Adamkiewicz MD; Yvonne Fry
Johnson MD, MSCR; Kitty Carter Wicker MD; Abdullah Kutlar MD
P-17: Sickle Cell Trait and Clinical Complications: Assessment of the Scientific Literature.
Colleen Clark BA; Allyce Caines MA; Olubukola Ayeni BS; Dana Bryant MPH; Vence Bonham JD
P-18: Stop the Clot®:What Every Healthcare Professional Should Know Online Curriculum
Development, Content, and Evaluation. Mary Ellen McCann RN, MA; Sara E. Critchley RN, MS;
Catherine B. Tencza MS; Diane Wirth ANP; Laura Earl RN, BSN, CACP; Kathleen McCool
PharmD, BCPS, CACP; Skye Peltier; Elizabeth Varga MS, CGC; Mary Lou Damiano RN, Med;
Brenda Riske MS, MBA, MPA; Alan Brownstein MPH
P-19: Strategies for the Development of Outreach Campaigns Targeted towards the South Asian
Community on Thalassemia. Gargi Pahuja MPH, JD; Robert Yamashita PhD
P-20: The Family Legacy: An Innovative Approach to Raising Awareness of Sickle Cell Disease and
Testing. Iyamide Thomas, BSc
P-21: Using Multiple Data Sets to Build a Surveillance System for Hemoglobinopathies: Early Lessons
from Georgia. Angela Snyder; Sharon Quary; James Eckman MD; Peter Lane MD; Robert Gibson
MD; Jackie George; Janeth Spurlin; Beverly Sinclair; Mei Zhou; Holly Avey; Jane Branscomb;
Lillian Haley
P-22: Using Web 2.0 for Health Education and Health Promotion for Patients with Bleeding Disorders.
Aimée Williams MPH, CHES, CPH; Cathliyn Buranahirun PsyD; Guy Young MD
P-23: VTE-Associated Hospitalizations Among U.S. Children, 2000-2006. Sheree Boulet DrPH; Scott
Grosse PhD; Craig Hooper PhD

EXPANDED AGENDA
Day 2, Tuesday, March 13, 2012

8:30 AM – 10:00 AM Plenary II: Public Health Approaches To Increasing The

Recognition Of Rare Blood Disorders
Moderator: Scott Grosse PhD
Registries and Data Collection Systems for Rare Blood Disorders. Jeffrey Lipton MD, PhD
Registries and Surveillance Systems with Examples for Rare Bleeding Disorders. Amy Shapiro MD
Challenges in Increasing the Detection of Under-recognized Disorders. Marie Faughnan MD
Overview of the NIH Rare Disease Consortia. Rashmi Gopal-Srivatava PhD
10:00 AM – 10:30 AM Networking Break


Deep Vein Thrombosis and Pulmonary Embolism
Moderator: Suman Rathbun MD, MS
BS11-1: Stop the Clot®: What Every Healthcare Professional Should Know Online Curriculum
Development, Content, and Evaluation. Mary Ellen McCann RN, MA; Catherine B. Tencza MS;
Laura Earl RN, BSN, CACP; Diane Wirth ANP; Sara E. Critchley RN, MS; Alan Brownstein MPH
BS11-2: Use of Online Media to Promote Public Awareness of Blood Clots & Clotting Disorders.
Richard Quattrocchi BA; Mary Ellen McCann RN, MA; Judi Kaplan Elkin MEd; Alan Brownstein
MPH
BS11-3: Webinar “Clinical Pearls” Series: Development, Content, and Evaluation. Mary Ellen McCann
RN, MA; Laura Earl RN, BSN, CACP; Kathryn Hassell MD; Diane Wirth ANP; Catherine B.
Tenzca MS
BS11-4: Creation and Use of Stop the Clot Forum Toolkit for Patient Education Programs. Judi Kaplan
Elkin MEd; Mary Ellen McCann RN, MA; Alan Brownstein MPH
BS11-5: Gaps in Hospital VTE Prophylaxis Demonstrate Need for Technology to Promote Patient
Safety in Hospitals. Alan Brownstein MPH; Greg Maynard MD, MSc, SFHM; Richard Friedman
MD, FRCSC; Elizabeth Varga MS; Lisa Fullam; Jack Ansell MD
BS12 Adherence To Prophylaxis/Treatment In Blood Disorders

Moderator: Susan Dyson MD, PhD
BS12-1: Evaluation of Adherence to Hemophilia Treatment As Measured Using the VERITAS
Adherence Scales — Natalie Duncan MPH
EXPANDED AGENDA
Part I: Why Does Adherence Matter? — Will Describe the Issue of Adherence in Hemophilia
and How HTCs Can Help by Measuring It
Part II: The VERITAS Adherence Scales — Will Describe IHTC’s Use of the VERITAS Scales.
BS12-2: Adherence to Hydroxyurea Among People with Sickle Cell Disease, Patient Perceptions on
Reasons for Nonadherence, Patient Concerns About Hydroxyurea Use, and Patient Knowledge
About Hydroxyurea Benefits and Risks. Laura DeCastro MD
BS12-3: Barriers and Facilitators to Adherence with Iron Chelation Therapy Among People with
Transfusion-dependent Blood Disorders, Including Sickle Cell Disease and Thalassemia.
Marsha Treadwell PhD
BS13 The Promises and Limitations of Molecular Technology in Blood and other Rare Disorders
Moderator: Carla Cuthbert PhD, FCCMG, FACMG
BS13-1: Genetic Studies in Public Health: Examples and Implications. Christopher J. Bean PhD
BS13-2: The Role of Re-sequencing in Clinical Laboratory Medicine. Lora J. H. Bean PhD, FACMG
BS13-3: The Emerging Role of Epigenetics in Public Health. Tengguo Li PhD
BS13-4: Translation of Technology to a Population: The Inhibitor Project. Connie Miller PhD
BS14 Use of Administrative Data for Surveillance of Under-Recognized Blood Disorders

Moderator: Scott Grosse PhD
BS14-1: Prevalence of Diagnoses of Hereditary Spherocytosis, or Congenital Spherocytic Anemia (ICD-
9 code, 282.0). Charlotte Baker DrPH
BS14-2: Diagnoses of Hereditary Hemorrhagic Telangiectasia (HHT) (ICD-9 code, 448.0) and of People
with Diagnoses of Other Conditions Suggestive of a Possible Missed Diagnosis of HHT.
Sheree Boulet DrPH
BS14-3: Validity of Administrative Data and the Completeness of the Clinical Registry: Preliminary
Findings of Linking Individual-level Administrative Data from Ontario with Clinical Registry
Data From St. Michael’s Hospital and the Hospital for Sick Children in Toronto.
Marie Faughnan MD
BS14-4: Developing An Algorithm for Identification of Sickle Cell Disease Cases from an
Administrative Claims Database. Danielle Smith MPH
BS14-5: Methods and Findings from the California Registries and Surveillance System for
Hemoglobinopathies (RuSH) Project. Lisa Feuchtbaum DrPH, MPH; Susan Paulukonis MA, MPH
BS15 Screening of Educational Videos

Moderator: Gretchen Simmons MPH, MCHES

EXPANDED AGENDA
12:00 PM – 1:30 PM Luncheon Plenary

Introduction: JoAnn Thierry PhD, MS, MSW
Moderator: Kimberly Haugstad MBA
• A Perspective of Moderate Hemophilia. Richard Pezzillo
• A Perspective on Hemophilia Care Inside and Outside the HTC System. Corey S. Dubin

BS16 Hemoglobinopathy Initiatives
Moderator: Althea Grant PhD
BS16-1: Building a Statewide Collaborative Hemoglobinopathy Team. Phyllis Sloyer RN, PhD, FAHM,
FAAP; Lanetta Jordan MD, MPH, MSPH; Russell Kirby PhD, MS, FACE; Lois Taylor RN, BSN,
CPM; Angela Finch; Lauren Whiteman MPH, CPH; Jean Paul Tanner MPH; Alexia Makris MSc
BS16-2: Cultural and Health Policy Implications of Sickle Cell Disorder in Ireland. Esther O.Pepple
Onolememen MSW, (NQSW), HDipSocPol, BA, (ED)
BS16-3: Organization of a National Network for Pediatric Sickle Cell Disease in Italy. Raffaella
Colombatti MD, PhD; Silverio Perrotta MD; Maddalena Casale MD ; Andrea Ciliberti MD; Gian
Carlo Del Vecchio MD; Domenico De Mattia MD; Benedetta Fabrizzi MD; Paola Giordano MD;
Valentina Kiren MD; Silverio Ladogana MD; Nicoletta Masera MD; Agostino Nocerino MD;
Lucia Dora Notarangelo MD; Giovanni Palazzi MD; C. Pasqualini MD; Anna Pusiol MD; Piera
Samperi MD; Paola Saracco MD; Marco Zecca MD; Giovanna Russo MD; Laura Sainati MD
BS16-4: Creating a Population-Based Hemoglobinopathies Surveillance Project. Mary Hulihan MPH;
Lisa Feuchtbaum MPH, DrPH; Lanetta Jordan MD, MPH, MSPH; William Young PhD; Yvonne
Greene; Ying Wang PhD, MPH; Adeline Barwick; Ellen Werner PhD; Althea Grant PhD
BS17 Identifying Information Needs Among Children and Teens Living with Hemophilia.
Moderator: Angelina Wang BA
BS17-1: Background / Importance of the Research. Neil Frick MS
BS17-2: Methodology Used. Gretchen Simmons MPH, MCHES
BS17-3: Formative Research Findings From the Environmental Scan and Formative Focus Groups.
Dianne Fragueiro MPH
BS17-4: Message Development (Creation of the Video Prototypes), Message Testing via Focus Groups,
and Refinement of the Messages. Mel Miller MA
BS17-5: Showing of Final Videos
BS18 Strategy and Implementation of Surveillance and Research Registries

for the Bleeding Disorders Community
Moderator: Diane Aschman
BS18-1: ATHNdataset: A Robust Surveillance and Research Infrastructure for the Bleeding Disorders
Community. Barbara Konkle MD
BS18-2: Provider and Patient Centric Tools for Research and Surveillance. Crystal Watson
EXPANDED AGENDA
BS18-3: Informatics Challenges in Public Health Surveillance Systems. Ying Su MD

BS18-4: Trends in Care of Patients with Bleeding Disorders: 20 Years of Data.
Brenda Riske MS, MBA, MPA; Judith Baker MHSA
BS19 Morbidity and Mortality of Venous Thromboembolism

Moderator: Gary Raskob PhD
BS19-1: Venous Thromboembolism (VTE) Attack Rates and Total US VTE Events in 2005 among
Currently- or Recently-Hospitalized vs. Community Residents: A Population-Based Cohort
Study. John A. Heit MD; Aneel A. Ashrani MD, MS; Cynthia L. Leibson PhD; Tanya M. Petterson
MS; Daniel J. Crusan BS; Kent R. Bailey PhD
BS19-2: How Many Deaths Are Caused by Pulmonary Embolism in the United States?
Scott D Grosse PhD; James Tsai MD, MPH; Hani K Atrash MD, MPH; J Michael Soucie PhD
BS19-3: Emergency Department Visits with a Diagnosis of Venous Thromboembolism, NHAMCS 1994-
2008. Hussain Yusuf MD, MPH; James Tsai MD, MPH; Azfar-E-Alam Siddiqi MD, PhD; Sheree
Boulet DrPH
BS19-4: In-Hospital Deaths Among Hospitalizations With Pulmonary Embolism in the United States:
Results From the 2001−2008 National Hospital Discharge Survey. James Tsai MD, MPH;
Scott D. Grosse PhD; Althea M. Grant PhD; Nimia Reyes MD, MPH; W. Craig Hooper PhD;
Hani K. Atrash MD, MPH
BS20 Iron Out of Balance

Moderator: Amy Shapiro MD
BS20-1: Iron Overload in Long-Term Survivors of Childhood Cancer. Jonathan D. Fish MD; Kiranmye
Reddy MD; Jennifer Eng MD; Claire A. Carlson RN, BSN; Jill P. Ginsberg MD
BS20-2: Ethnicity Influences the Risk of Severe Iron Deficiency Anemia in Toddlers. Ashutosh Lal MD;
Lun Li BA; Jeanette Nichols PNP; Alison Matsunaga MD
BS20-3: Serum Transferrin Saturation and Inpatient Mortality and Hospital Length of Stay Among
Medicare Beneficiaries. Arch Mainous PhD; Charles Everett PhD; Vanessa Diaz MD, MS; Michele
Knoll MA; Mary Hulihan MPH; Althea Grant PhD
BS20-4: Calcium Channel Blocker Use and Serum Ferritin in Adults with Hypertension.
Arch Mainous PhD; Eugene Weinberg PhD; Vanessa Diaz MD, MS; Sharlee Johnson MA;
Mary Hulihan MPH; Althea Grant PhD


SS6 Effectiveness of Hydroxyurea in Children with Sickle Cell Disease
Moderator: Roshni Kulkarni MD
SS6-1: Current Data on Efficacy and Effectiveness of Hydroxyurea in Children with
Sickle Cell Disease. Win Wang MD

EXPANDED AGENDA
SS6-2: Implementation of Hydroxyurea in Clinical Practice. Russell E. Ware MD

SS6-3: Overcoming Barriers to Implementation of Hydroxyurea. Courtney D. Thornburg MD
SS7 Sickle Cell Disease: Epidemiology and Disease Burden in Low-Income Countries.
Moderator: Isaac Odame MD
SS7-1: Evidence-Based Map of the Global Distribution of the Sickle Cell Gene. Frederic B. Piel PhD
SS7-2: Burden of Sickle Cell Disease in Central Africa: Morbidity and Causes of Mortality.
Leon Tshilolo MD
SS7-3: Burden of Sickle Cell Disease in India: Morbidity and Causes of Mortality. Dipty Jain MD
SS8 Using Rare Disease Consortia to Integrate Health Resources and Services and Research.
Moderator: Michele A. Lloyd-Puryear MD, PhD
SS8-1: Rare Diseases Clinical Research Network. Rashmi Gopal-Srivastava PhD
SS8-2: Brain Vascular Malformation Consortium. William L. Young MD
SS8-3: HHT Project. Marie E. Faughnan MD
SS9 Transition Issues

Moderator: Marilyn Manco-Johnson
SS9-1: Transition For Adolescents And Young Adults With Sickle Cell Disease: Key Challenges And
Concerns. Joseph Telfair DrPH, MSW, MPH
SS9-2: The Bleeding Disorders Transition Program of Children’s Memorial Hospital (CMH): A Process
Evaluation. Faith V. Gately MS; Susan Gamerman MS, PNP-BC; Elizabeth Fung PhD, LCSW;
Kristin Clemenz MS, CGC; Rukhmi Bhat MD; Nichole Hroma BS, PT; Anjali A. Sharathkumar
MD, MS
SS9-3: Development and Implementation of a Transition Timeline for Pediatric Patients with
Thalassemia. Melina Cheong RN(EC), MN; Geradline Cullen-Dean RN, MN
SS10 Sickle Cell Carrier Screening Programs and Clinical Implications

Moderator: Vence Bonham JD
SS10-1: A Systematic Review of Clinical Implications of Sickle Cell Carrier Status. Vence Bonham JD
SS10-2: Sickle Cell Carrier Screening Programs and Clinical Implications. Kathryn Hassell MD
SS10-3: Social and Ethical Aspects of Sickle Cell Trait Screening Programs.
Carlton Haywood Jr. PhD, MA
4:25 PM – 4:35 PM Transition Break
EXPANDED AGENDA
SS11 Comprehensive Care for Sickle Cell Immigrant Patients in Europe

Moderator: Anne Greist MBBS
SS11-1: Comprehensive Care for Sickle Cell Immigrant Patients in Italy: a Reproducible Model
Achieving High Adherence. Raffaella Colombatti
SS11-2: The Challenges of the Management of Sickle Cell Disease Children in France.
Mariane de Mantalembert
SS11-3: Sickle Cell Disease, Lessons From the Belgian Cohort. Béatrice Gulbis; Phu Quoc Lê
SS12 Promoting Partnerships Between Community-Based Organizations and Health

Care Providers to Address Specific Health Problems
Moderator: Karen Amy Droze MS
SS12-1: Effective Partnering in North Carolina. Sue Fletcher PhD; Steven Humes MM, MPH
SS12-2: Chapter Collaboration with Florida Hemophilia Treatment Centers. Fran Haynes BA
SS12-3: RuSH Health Promotion Strategies From the Field. Melissa Creary MPH; Mary Hulihan
MPH; Shammara Pope MPH; RuSH Sites in California Department of Public Health, Florida
Department of Health, Georgia Department of Public Health, Michigan Department of
Community Health, New York State Department of Public Health, North Carolina Division of
Public Health, Pennsylvania Department of Health
SS13 Basic Principles of Consent in Research, Surveillance and Patient Care

Moderator: Scott Campbell MSPH
SS13-1: Essentials of Consent and Informed Decision. Scott Campbell MSPH
SS13-2: Informed Consent for Persons with Hemophilia. Corey Dubin
SS14 Females with Bleeding Disorders: Role of Primary Care

Moderator: Chris Parker PhD, MPH
SS14-1: Community Health Centers: Improving Access to Care and Reducing Health Disparities.
A.Seiji Hayashi MD, MPH, FAAFP
SS14-2: The Past, Present and Future of Care and Research in Women with Bleeding Disorders.
Peter Kouides, MD
SS14-3: The Value of Integrated Primary-specialty Care in Women with Bleeding Disorders.
Christopher Stille MD, MPH
SS15 Telemedicine and Telehealth: Innovative Tools for Addressing Public Health Challenges and Access to Care
Moderator: Roshni Kulkarni MD
SS15-1: Telemedicine and Telehealth: Innovative Tools for Addressing Public Health Challenges and
Access to Care. Pamela Whitten, PhD
SS15-2: Telehematology and Telehemophilia from the Trenches — A Practical Approach.
Roshni Kulkarni, MD

EXPANDED AGENDA
Day 3, Wednesday, March 14, 2012

8:00 AM – 9:30 AM Plenary III: Blood Disorders In Women:

Challenges Across The Lifespan
Moderator: Andra James MD
• Bleeding Disorders. Ruth Ann Kirschman WHNP-BC, MS
• Clotting Disorders. Stephan Moll MD
• Hemoglobinopathies. Lanetta Jordan MD
9:30 AM – 10:00 AM Networking Break

10:00 AM – 11:30 AM Closing Plenary: The Future of the Blood Disorders Workforce
Moderator: Bruce Evatt MD
• Overview. Bruce Evatt MD
Current Workforce Issues, Historical and Present Challenges, Barriers and Efforts to Overcome Them:
• American Society of Hematology. Lawrence A. Solberg, Jr. MD, PhD
• American Society of Pediatric Hematology/Oncology. George Buchanan MD
• National Heart, Lung and Blood Institute. Donna DiMichele MD
• Non-physician Workforce. Judith Baker MHSA
11:30 AM – 12:00 PM Closing Session: Public Health Leadership in Blood Disorders

Moderator: Coleen Boyle PhD, MSHyg
Speaker: TBA
Day 4, Thursday March 15, 2012

The Conference of the Global Sickle Cell Disease Network
Day 5, Friday March 16, 2012

Sickle Cell and Thalassaemia: Global Public Health Issues Come of Age:
ABSTRACTS AND SESSION SUMMARIES
Abstracts and Session Summaries

9:00 AM – 10:30 AM Opening Plenary: Translating Science Into Action
For evidence-based interventions to manage people with blood disorders, speakers will
discuss the following:
Chronology of the development of the intervention.
1. What is the evidence for effectiveness?
2. What is the utilization rate of the intervention?
3. What have been the barriers to implementation?
• Systems
• Providers
• Payers
• Patient education, adherence issues
4. What are the promoters or facilitators to implementation?
Presentations:
• Factor prophylaxis in young patients with severe hemophilia to prevent joint disease.
Craig Kessler MD
• Hospital prophylaxis for VTE prevention. Jason Stein MD, SFHM
• Hydroxurea in patients with SCD to prevent crises. Sophie Lanzkron MD, MHS
BS1 Raising Awareness of Deep Vein Thrombosis and Pulmonary Embolism

BS1-1: Increasing Women’s Awareness of DVT-PE: This Is Serious Campaign.

Suman Rathbun, MD, MS
In this special session panelists will describe their work through a CDC cooperative agreement in which the “This
Is Serious” campaign was launched to increase awareness of women on their risk for deep vein thrombosis and
pulmonary embolism. Risk factors specific to women include birth control, postpartum, and hormone replacement
therapy. Information disseminated through this campaign is intended to increase the knowledge and awareness,
or influence the perceptions, beliefs, and attitudes of people who have been affected by clotting disorders. Venous
thromboembolism is the leading cause of hospital-associated death, thus hospitals represent a focused environment

to develop this awareness campaign. Women with conditions that place them at higher risk for VTE, such as
those in care for pregnancy/postpartum, trauma/major surgery or cancer, are target audiences within the hospital
environment. The “This Is Serious” campaign has been developed and piloted in coordination with the Spirit of
Women Hospital network, a national network of more than 80 hospitals and 450 clinics). Panelists will present
an overview of the “This Is Serious” campaign, information about dissemination strategies as well as program
evaluation activities to date.
BS1-2: Utilization of Web-Based Outreach Tools to Provide Information on VTE: The Clot Connect
Project.
Stephan Moll MD; Beth Waldron MA
Background: Patients with thromboembolic disease have information and support needs to understand their
disorder and diagnostic and treatment plans. Additionally, health care professionals (HCP) managing these patients
need easy access to up-to-date, clinically relevant information related to diagnosis and management of patients
with thrombosis and thrombophilia.
Objectives: To assess the utilization of several web-based education resources that were created in the Clot
Connect project.
Methods: We developed a web-based education initiative with the following outreach components: website
(clotconnect.org)
1. educational blog for patients (clotconnect.wordpress.com)
2. educational blog for HCP (clotconnectmd.wordpress.com)
3. e-newsletter for both groups (www.clotconnect.org/about-clot-connect/newsletter-archive)
4. online support forum for patients (http://www.clotconnect.org/patients/support-forum)
Components a-d were implemented in December 2010, component e in May 2011. Utilization was determined using
counts of visitors and subscribers.
Results: There has been steady growth of usage in all web outreach components: From January to September,
average daily visits increased from 16 to 51 for the website; 43 to 496 for the patient education blog; 35 to 218
for the HCP blog. Subscriptions to resources (those who have opted to receive automatic email updates of the
latest published materials) are, as of September 1, 2011: 382 for newsletter, 154 for patient blog and 212 for HCP
blog. Site analytics show the educational topics most accessed by patients were on the following topics: new
anticoagulants (27% of visits), treatment of DVT (11%) and the symptoms and diagnosis of DVT (7%). Educational
topics most accessed by HCP were: new anticoagulants (34% of visits), treatment and clinical care issues (16%)
and vascular anatomy (8%).
Conclusion and implications for public health practice: In its short life of existence (9 months as of Sept
2011) the Clot Connect web-based education resources on thrombosis, thrombophilia and anticoagulation have
been used by a large number of individuals. The patient education blog is more frequented than the health care
provider blog, yet more individuals are signed up to receive regular automatic updates of the health care provider
blog than the patient blog. These outreach methods can be a potentially effective way to impart educational
information on thrombosis, thrombophilia and anticoagulation to both patients and health care professionals.
Reported by Patients with Cancer.
Frederick R. Rickles MD; Alan Brownstein MPH; Greg Maynard MD, MSc, SFHM; Elizabeth Varga MS, CGC; Richard Friedman MD,
FRCSC; Jack Ansell MD
Background: Active cancer patients are at increased risk for DVT/PE when hospitalized, after surgery and during
cancer therapy. Mortality is greater among cancer patients with DVT/PE than among those with cancer alone.
Objectives: The objectives of this study were to measure DVT/PE awareness among patients with cancer and to
identify gaps in evidence-based prophylaxis reported by these patients.
Methods: Survey was conducted among 500 adults, screened from online panel, diagnosed with cancer within 12
months. Responses from patients who required hospital stay for treatment (n=206) were compared to responses of
patients who were treated as outpatients (n=294).
Results: Of 500 patients surveyed, mean age was 58 (range 20-80+), 64% female, and cancer diagnoses included:
breast 34%, prostate 10%, lung 9%, skin 8%, colon 5%. Among all respondents, 76% had not heard of medical
condition called DVT and 85% had not heard of PE. Significantly more outpatient respondents were unfamiliar with
the terms DVT (85%; p=<.05) and PE (91%; p=<.05) compared to inpatient respondents. Among 155 respondents
who said they could name DVT risk factors, 8% named surgery and 4% named chemo/radiation or some cancer
treatments. Among 86 respondents who said they could name PE signs/symptoms, 69% cited breathing difficulties,
28% chest tightness, 5% coughing up blood. Less than one-third (27%) of all respondents said their doctor/
healthcare professional (HCP) told them about blood clot risks due to cancer. When compared to inpatient
responses, significantly fewer outpatient respondents (14%; p=<.05) said their doctor/HCP told them about blood
clot risks due to cancer. About half (48%) of all respondents said they were told to get out of bed and walk around.
DVT prophylaxis reported by all respondents included: compression stockings 35%, mechanical compression 31%,
aspirin 28%, anticoagulant pill 21%, anticoagulant injection 16%.
Conclusion and implications for public health practice: Oncology patient awareness of DVT/PE is low. Public
awareness and effective communications between patients and healthcare professionals are needed to optimize
patient/physician dialogue about DVT/PE and prophylaxis.
Reported by Recently Hospitalized Patients.
Greg Maynard, MD, MSc, SFHM; Alan Brownstein MPH; Jack Ansell MD; Elizabeth Varga MS, CGC; Richard Friedman MD, FRCSC
Background: Hospitalization is a major risk factor for DVT/PE, with a ten-fold increased risk for venous
thromboembolism (VTE) among hospitalized patients with acute medical illness, and about 1 in 10 hospital deaths
are related to PE.
Objectives: The objectives of this study were to measure DVT/PE awareness among patients hospitalized for >3
days, and to identify barriers and gaps in evidence-based prophylaxis practices as reported by these patients.
Methods: A survey was conducted among 500 adults, screened from an online panel, who had been admitted to a
hospital for >3 days within 12 months.
Results: 500 are patients surveyed, mean age was 52.5 (range 20-80+) and 64% female. Hospital stays totaled 3-4
days 51%, 5-10 days 37%, >10 days 12%, with admissions for: surgery 43%, major illness 32%, accident/trauma
11%, childbirth 6%, other 21%. Substantial gaps of awareness in terms related to blood clots, such as “DVT”, “PE”

and “VTE” are widely reported among all respondents (only 28% had heard of DVT and 15% PE, respectively),
even when there was a personal or family history of DVT/PE. There was also a substantial lack of awareness of
risk factors and signs and symptom of DVT/PE. However, among all respondents, 83% said that they know what
a “blood clot” is, and 99% recognize that blood clots can be life threatening. About half (46%) of respondents
reported that their doctor or healthcare professional did not discuss the risk of DVT or blood clots related to
hospitalization. Less than one-third of all respondents report DVT prophylaxis with either an anticoagulant pill or
anticoagulant injection. DVT prophylaxis reported by respondents included: 63% ambulation, 39% compression
stockings, 37% mechanical compression, 37% aspirin, 29% anticoagulant injection, 28% anticoagulant pill.
Conclusion and implications for public health practice: Despite significantly increased risk of DVT/PE and
high reported personal and family history of DVT/PE, awareness of specific terms DVT/PE, and familiarity with
DVT/PE risk factors, is low, but awareness of term “blood clot” is high. Public awareness and hospital interventions
are needed to improve patient awareness, to optimize DVT prophylaxis and to reduce hospital-related morbidity/mortality.
BS2 Frontline Perspectives Around Blood Disorders

BS2-1: A National Infrastructure for Rare Blood Disorders: An Evaluation of Staffing, Training and
Services.
Ann Forsberg MA, MPH; Suzanne Kapica MA, LPC; Judy Primeaux MA
Background: The United States Hemophilia Treatment Center Network (USHTCN) was funded by the Health and
Human Services Administration (HRSA) in 1976 to develop a national infrastructure for care of individuals with
rare bleeding disorders to access coordinated multidisciplinary care. This network of 129 centers currently treats
over 30,000 individuals throughout the US states and its territories.
Objectives: Despite the longevity of the network, an evaluation of the USHTCN has never been undertaken. The
objectives of the session are: 1) report the results from the first formal assessment of the USHTCN attributes; 2)
describe educational/training programs for staff; and 3) discuss sustainability of the structure.
Methods: An E-survey was administered to the 129 centers of the USHTCN to assess variations in staff and
services. Demographic data from the Hemophilia Data Set (HDS), an aggregate dataset collected annually, was
combined with the data from the E-survey to provide patient demographics. Comparisons were made between
three center size categories: 1) Small (<115 patients); 2) Midsize (115-289 patients); and 3) Large (>289 patients).
Results: : Analyses by center size showed no difference in the composition of core teams, coordination of services
with specialists, including coagulation laboratory testing. There was no difference in the experience level of staff
or in the utilization of national educational opportunities across size categories to orient new staff. A significantly
greater number of larger centers had outpatient drug distribution programs that generate revenue to support
center services.
Conclusion and implications for public health practice:The proposed session will provide an overview of
the characteristics of the USHTCN, an infrastructure that is a model of a national network providing coordinated,
multidisciplinary care for persons with a rare blood disorder who are geographically dispersed. The network has
maintained a highly experienced staff and oriented new staff through educational programs offered nationally and
regionally. The USHTCN has also been able to maintain a high level of services despite decreased federal funding
and institutional cost cutting by using a drug distribution program.
BS2-2: Cancer Surveillance Defines Diamond Blackfan Anemia (DBA) As a Cancer Predisposition
Syndrome.
Adrianna Vlachos, MD; Philip S. Rosenberg PhD; Eva Atsidaftos MA; Blanche P. Alter MD, MPH; Jeffrey M. Lipton MD, PhD
Background: DBA is an inherited ribosomopathy characterized by bone marrow failure and congenital anomalies.
Solid tumors (ST), hematologic malignancies and myelodysplastic syndrome (MDS) in DBA patients have been
reported. Cancer predisposition has been hypothesized however has not been confirmed. In 1991 we established
the Diamond Blackfan Anemia Registry (DBAR), a comprehensive, hypothesis-driven and mission-directed
database, with the prospect of discovering patterns and trends unrecognized or only suggested in the literature.
Objectives: To report the ages, types, outcomes and hazard rates in DBA patients with cancer and MDS enrolled
in the DBAR.
Methods: Patients/families with DBA and their physicians completed a detailed questionnaire. Information was
verified through medical records and telephone interviews. The ratio of observed to expected (O/E) cancers
was computed using SEER data, and the cumulative incidence and hazard of hematopoietic stem cell transplant
(HSCT), acute myeloid leukemia (AML), ST, and MDS by age were calculated.
Results: Of 608 patients enrolled, there were 21 cancers/MDS in 19 untransplanted patients: one AML, one
AML after MDS, three MDS, one lymphoma, and 15 ST, including three colon, three gynecologic, two breast, two
osteosarcoma, and one each testis, lung meningioma, oral cavity, melanoma, and soft tissue sarcoma. The median
age at diagnosis of cancer/MDS was 41 years (2 to 64 yrs). The O/E ratio for any cancer was 5.4 (P < 0.05).
Significantly elevated O/E ratios were 287 for MDS, 32.6 for sarcoma, 27.9 for AML and 23.4 for colon carcinoma.
By their mid-40s, 18% of patients had received a HSCT, 19% had died, 5% had AML, and 16% had developed
a ST. The cumulative incidence of cancer, excluding MDS, was 22% by their mid-40s. Three additional cancers
(osteosarcoma and rectal carcinoma, post HSCT and basal cell cancer, not counted in SEER) were also reported
but not analyzed.
Conclusion and implications for public health practice: DBA is clearly both a bone marrow failure and a
cancer predisposition syndrome. There is a broad spectrum of cancer types in DBA, with fewer cases of AML and
more diverse solid tumors reported in the DBAR than suggested by the literature. Furthermore epidemiological
data from the DBAR will assist in developing cancer/MDS screening strategies for DBA patients.
BS2-3: Transitioning the Diamond Blackfan Anemia Patient From Pediatric to Adult Care.
Johnson Liu MD; Ellen Muir BS, MA; Adrianna Vlachos MD; Sandeep Jauhar MD; Yael Harris MD; Irwin Klein MD; Jeffrey M. Lipton
MD, PhD
Background: A major impediment to effective life-long care of patients with the inherited bone marrow failure
syndrome, Diamond Blackfan anemia (DBA), is the transition from pediatric to adult care. There are many
historical reasons for this, including structural deficiencies in health care delivery for a rare and complex disorder
and lack of resources and institutional commitment.
Objectives: We have attempted to create a new model of transition from pediatric to adult care of DBA patients,
emphasizing a team-based approach with active participation and communication from multiple subspecialty
physicians from the Departments of Pediatrics and Medicine. We hypothesize that the integration of an adult
provider into the pediatric paradigm is essential for successful transition.

Methods: As part of the ongoing surveillance program to follow the natural history of DBA patients enrolled in
the North American Diamond Blackfan Anemia Registry (DBAR), we have attempted to formalize the transition
of patients over the age of 18 by having them evaluated by an adult hematologist (embedded in the pediatric
program) with expertise in bone marrow failure syndromes.
Results: In the past 5 years, 22 DBA patients have undergone evaluation: 10 males and 12 females, ranging in
age from 18 to 55. Frequently seen clinical presentations included: adult-intrinsic management issues (fertility,
smoking, psychosocial and financial concerns); complications of iron overload and corticosteroid use; surgical
management of avascular necrosis; and cancer surveillance. Patients with identified medical problems were
referred as needed to adult cardiologists, endocrinologists, and orthopedic surgeons. Several patients required
hospital admission (adult service) for catheter-associated infections or intensive iron chelation. In addition,
new clinical therapeutic trials have been initiated to specifically target the adult-aged cohort of DBA patients:
we recently obtained approval for a trial of sotatercept, a novel chimeric protein that modulates activin-A and
promotes human erythropoiesis.
Conclusion and implications for public health practice: In conclusion, we describe a new clinical model to
facilitate transitioning of care in DBA. In addition to improving the health outcomes of DBA patients, we suggest
that our model may be widely applicable to other more common genetic blood disorders such as hemophilia and
sickle cell anemia.
BS2-4: Strategies For Teaching Pain Management In The Form Of Workshop To The Parents/Patients
In Sickle Cell Disease.
Melanie Kirby-Allen MD; Fiona Campbell MD; Khush Amaria PhD, C. Psych; Anne Ayling Campos BSc; Michael Jeavons MD; Nagina
Parmar PhD; Melina Cheong RN(EC)
Introduction: Pain is the most common presentation to hospital for children with Sickle Cell Disease. Pain is
caused in part when red blood cells change shape, become distorted and block very small blood vessels which
means that oxygen isn’t delivered to tissues. Lack of oxygen causes pain. Any bone can be affected including
arms, legs, back, and skull. When patients and parents are seen in the Comprehensive Care Sickle Cell Clinic,
they are taught how to manage pain by the health care team, usually nurses and physicians. They are generally
taught how to give medication and a few physical strategies to treat pain episodes. These clinics are always
overbooked and although teaching of pain management is done, the time required to reinforce these strategies
is never enough. Assessing pain and developing a treatment plan takes time, and sometimes this is not done as
well or as consistently as it should be. There is more to treatment than just pain medicine. We refer to the 3 Ps of
treatment- pharmacological (medication), physical (e.g. warmth and other comfort measures) and psychological
(e.g. distraction and relaxation) strategies.
Rationale or Hypothesis: The purpose of a pain management workshop is to teach patients and their parents
how to self-manage pain using all of the 3Ps of treatment modalities available. The hypothesis is that with better
education parents /patients will have better control of their pain starting at home and in the long term will present
less frequently to hospital. To improve the understanding of the participants of etiology of pain, assessment of their
pain, the rational for treatment involving all 3 Ps, and increase confidence in managing pain.
Methodology: The workshop information was distributed to the parents and patients in person, phone calls and by
mail. Registration was done in the first half an hour and a pre-questionnaire was given to the patients and parents
at this time. Presentations on various topics as outlined above, including assessment of 3Ps, physical approaches
used in pain management and psychological strategies to self-manage pain. In the afternoon, breakout sessions
were planned which included relaxation exercises, guided imagery and self-hypnosis. Post meeting
questionnaire and the meeting evaluation forms were given to the parents and patients at this time before
wrapping up the workshop.
Results: Overall, meeting evaluation forms summarized our results of overall meeting impression by the parents.
All of the parents who attended the workshop wrote that they felt welcome at the workshop, the topics discussed
were quite meaningful to patients and parents, and they felt more confident and comfortable in treating the pain
experienced by their children. 92 % of the participants mentioned that they understand more about the subject
matter after attending the workshop, 85% mentioned that they will definitely put this knowledge to good use,
64% described that they have learnt skills they can practice and they are more confident now. When asked what
motivated them to come to this workshop, 50% of the participants mentioned that they wish to improve their
family life, they were curious and some said that the topic of the workshop was quite relevant at this time. 85%
of the participants suggested that they would recommend this workshop to their other friends. Some of the
participants felt that there should be 2-3 workshops like this should happen once a year.
Conclusions: Results of the post questionnaire showed that participants were able to describe what causes pain
in Sickle Cell disease and describe strategies for assessing and managing pain. In the past month, Sickle Cell Pain
Day Unit for the treatment of uncomplicated vaso-occlusive pain was opened. The goal of having a day unit will be
to improve pain management, reduce the number of inpatient admissions and reduce the number days missed from
work for parents and school for patients. Over time, we will evaluate the impact of this series of workshops. We
plan to continue these workshops and their evaluation over time.
BS3 Pediatric Thrombosis: A Growing Public Health Issue

BS3-1: Inferior Vena Cava Thrombosis in Children: Prevalence and Risk for the Post Thrombotic
Syndrome.
Marilyn Manco-Johnson MD; Michele Beckman MPH; Rhonda Knapp-Clevenger PhD; Courtney Thornburg MD, MS; Roshni Kulkarni MD;
Steven Pipe MD; Vilmarie Rodriquez MD; Judith Anderson MD; John Heit MD; Stephan Moll MD; Thomas Ortel MD, PhD; Claire Philipp MD
Background: Venous thromboembolism (VTE) in children is a rare event. However, the post thrombotic syndrome
(PTS), a chronic disabling complication of VTE, presents disproportionate health burdens for children because
most children survive to live six or more decades following an episode of VTE.
Objectives: This report analyzed various risk factors for PTS in children in comparison to adults. In particular, this
study examined the relationship of thrombus site to PTS outcome.
Methods: Characteristics including demographics, clot site, thrombophilia evaluation, treatment and outcome
were prospectively collected from consecutive consenting participants enrolled in one of seven Thrombosis and
Hemostasis Centers from August 2003 to June 2010. PTS outcome and risk factors were compared between
pediatric and adult groups.
Results: Four hundred twenty pediatric and 2628 adult participants with VTE were enrolled into the registry.
Although children were less likely to manifest lower extremity VTE (p < 0.0001), they were 4 times more likely to
manifest IVC involvement with or without lower extremity VTE and 10 times more likely to manifest IVC extension

from a lower extremity VTE (p < 0.0001 for each). PTS was more prevalent in children with IVC involvement,
compared with adults (34.8% vs. 2.7%, p = 0.001). Obesity was increased in both children and adults with PTS
(p = 0.04, 0.0002 respectively). In univariate analysis IVC involvement, lower extremity VTE recurrence and
obesity were risk factors for PTS in children. In multivariate analysis, IVC site and lower extremity VTE recurrence
remained risk factors for PTS with odds ratios of 12.3 (95% CI 3.9, 38.8) and 5.6 (95% CI 1.6, 20.2), respectively.
Upper extremity VTE showed similar but less significant findings.
Conclusion and implications for public health practice: IVC involvement with or without lower extremity
are more common in children with VTE and present a 12-fold increased risk for chronic PTS. Children with VTE
present different outcome risks that can be reduced using diagnostic imaging at presentation to include the IVC
in order to determine proximal extent of VTE. Careful consideration should be given to more aggressive initial
therapies in children with IVC involvement with VTE to prevent PTS.
BS3-2: Trends in Venous Thromboembolism-Associated Hospitalizations Among U.S. Children, 1994-

2008.
Sheree Boulet DrPH; Scott D. Grosse PhD; Courtney Thornburg MD, MS; Hussain Yusuf MD, MPH; James Tsai MD, MPH;
W. Craig Hooper PhD
Background: Information on trends in venous thromboembolism (VTE) in U.S. children is scant and inconsistent.
Temporal trends in risk factors for pediatric VTE have not been well described.
Objectives: To describe recent national trends in VTE-associated pediatric hospitalizations and to assess
concomitant temporal variations in factors associated with pediatric VTE.
Methods: The study included all non-routine newborn hospitalizations for children 0-17 years of age in the 1994-
2009 Nationwide Inpatient Samples. Venous thromboembolism diagnoses were identified by ICD-9-CM codes.
Trends in patient and hospital characteristics and the rate of hospitalization per 100,000 population <18 years of
age were assessed using variance-weighted least squares regression. Multivariable logistic regression models were
used to estimate the probability of VTE diagnosis over the study period. All estimates accounted for the complex
sampling design of the data.
Results: The rate of VTE-associated hospitalization increased for all age strata, with the largest increase noted
among children <1 year of age (from 18.1 per 100,000 during 1994 to 49.4 per 100,000 during 2009). Compared
with 1994—1997, the adjusted odds of hospitalization with a VTE diagnosis were 50% higher during 2006—2009
(aOR 1.50, 95% CI 1.30—1.72). Compared with pediatric hospitalizations without a VTE diagnosis, those with
a VTE were more likely to have venous catheters (aOR 9.03, 95%CI 8.38—9.72), related medical conditions
(aOR 3.19, 95% CI 3.14—3.36) and malignancy (aOR 2.92, 95% CI 2.67—3.19). Conclusions and implications
for public health: The rate of VTE-associated hospitalization among U.S. children increased from 1994 through
2009. Increases in venous catheter procedures likely contributed to the observed trends. Studies that use medical
records to validate the presence of VTE codes in pediatric hospital discharges are needed. Collaborative cohort
studies are also needed to assess temporal variations in pediatric VTE and to inform preventive and therapeutic
approaches for optimizing immediate and long term health outcomes.
BS3-3, BS3-4, and BS3-5: Pediatric Thrombosis

Background: The incidence of thrombosis in children has been steadily rising for the past 20+ years as evidenced
by the recent publications by Raffini et al. and Setty et al. (among others). The impact on public health of
thrombosis in pediatric patients differs significantly from that of adults in several ways. First, the etiology in
children is very different with thrombosis most often occurring in children with chronic diseases. Second, although
the incidence in children is much lower, the fact that most children with thrombosis survive the event and the
illness which led to the event combined with the high rate of sequelae (recurrence, post-thrombotic syndrome, and
even pulmonary embolism) in these young patients means that many will live for many decades with potentially
disabling complications. As such developing a better understanding of the epidemiology and risk factors of
pediatric thrombosis is an important step in improving outcomes.
Objectives: This Special Session will include 3 presentations by experts in the field all of whom have made
important contributions to the understanding of pediatric thrombosis epidemiology and health outcomes.
Methods: Dr. Bryce Kerlin will give a 15 minute presentation on the current status of our understanding of
pediatric thrombosis. Dr. Guy Young will discuss novel approaches for pediatric thrombosis surveillance, and Dr.
Courtney Thornburgh will discuss how such knowledge can result in improved outcomes and reduced disease
public health burden.
Results: At the conclusion of the presentations and discussion, the audience should have an improved
understanding of the current state of knowledge of the epidemiology of pediatric thrombosis as well as an
understanding of novel methods for pediatric thrombosis surveillance. In addition, the audience will gain an
understanding of how this knowledge can translate into improved outcomes.
Conclusion and implications for public health practice: As the incidence of pediatric thrombosis continues
to rise and more and more children suffer from the morbidities associated with the sequelae including post-
thrombotic syndrome, recurrence, and pulmonary embolism. Furthermore, most children with thrombosis survive
their event, however may be left with life-long morbidities which can lead to decades of disability and poor health.
Improving health outcomes and reducing the public health burden begins with understanding the epidemiology
of this rising public health problem. This session will address these concerns and include a discussion of novel
strategies for thrombosis surveillance and begin to explore how such strategies can improve outcomes.
Presentations:
BS3-3: Current Status on the Epidemiology of Thrombosis in Children.
Bryce Kerlin MD
BS3-4: Novel Strategies for National Surveillance of Pediatric Thrombosis.

Guy Young MD
BS3-5: Health Outcomes Research in Pediatric Thrombosis: Strategies for Treatment and Prevention.
Courtney Thornburg MD, MS

BS4 Hemoglobinopathy Screening

BS4-1: Estimates of the Birth Prevalence of Sickle Cell Disease in African Populations: Implications
for Newborn Screening Programs in Africa and the United States.
Scott D. Grosse PhD; Thomas N. Williams MD, MPH; Djesika Amendah PhD; Frederic B. Piel PhD
Objectives: The birth prevalence of sickle cell disease (SCD) detected through newborn screening, which is
routine in the US, has been estimated at 1 in 330 to 1 in 400 African-American newborns. SCD in Africa is both
more common and more lethal, with the majority of children with SCD dying in childhood. Newborn screening for
SCD combined with preventive healthcare can result in the survival of most affected children. The purposes of this
study are 1) to provide information to screening programs in the United States about the expected frequency of
SCD among infants born to immigrants from African countries, and 2) to provide estimates of the numbers of births
with SCD to inform newborn screening policy decisions in African countries. To date, only Ghana has made a policy
decision to implement newborn screening for SCD.
Methods: We conducted a systematic literature review of published studies reporting results of SCD pilot
screening of newborn infants (<3 months of age) in sub-Saharan African populations. We used the Hardy-
Weinberg equilibrium formula to calculate the expected frequencies of sickle cell trait (HbAS) and the two major
SCD variants (HbSS and HbSC) reported in African samples and compared them with the reported frequencies
observed in screening studies. In addition, a database of population surveys with data on hemoglobin alleles
compiled as part of the Malaria Atlas Project (MAP) was used to create a map of HbS allele frequencies within a
Bayesian geostatistical framework.
Results: The prevalence of SCD among newborns varies widely in different parts of Africa, based chiefly on
predicted estimates calculated from allele frequencies; most screening studies are too small to yield reliable
estimates. SCD is rare in some countries, notably Ethiopia and South Africa. It is most common in the eastern part
of West Africa. It is also common in Central Africa and the Great Lakes region of East Africa.
Conclusions: Screening for SCD should be prioritized in African countries with high prevalence. An implication
for US screening programs is that immigration is likely to increase the numbers of Black children born with SCD in
the US.
BS4-2: Incidence Of Sickle Cell Diesease Among Newborns In New York By Maternal Race/Ethnicity
And Nativity–A Population-Based Study.
Ying Wang PhD, MPH; Joseph Kennedy MPH; Regina Zimmerman PhD; Sanil Thomas MS; John Berninger BS; Michele Caggana ScD;
Scott Grosse PhD
Objectives: Sickle cell disease (SCD) is a genetic disorder that affects red blood cells, causing lifelong anemia and
other complications that contribute to premature death. SCD is most common among persons of African descent.
The incidence of SCD among African-American births is between 1 in 300 and 1 in 400, but rates are higher in
Africa and the Caribbean. The impact of immigration on the incidence of SCD in the US has not been documented
previously. Our objectives are to estimate the incidence of SCD and SCD sub-categories among New York State
newborns identified from newborn screening (NBS) and determine if maternal nativity is associated with SCD
incidence among newborns.
Methods: Confirmed SCD newborns, identified from the New York State NBS Program for the years 2000-2008,
were matched to their respective birth certificates. The live birth records, obtained from the NYS Department of
Health and the New York City Department of Health and Mental Hygiene, provided birth and maternal information
on cases. Incidence rates were computed to examine the association between maternal nativity and SCD incidence.
Results: From 2000 to 2008, 1,911 New York newborns were diagnosed with SCD. One in every 1,146 live births
was diagnosed with SCD. Newborns of black mothers accounted for 85% of the cases with an estimated annual
incidence of 1:229 live births. The annual incidence of SCD was 1:313 among newborns of US-born black mothers
and 1:159 among newborns of foreign-born black mothers.
Conclusions: This study provides the first estimates of NYS annual SCD incidence by maternal race/ethnicity
and nativity. As expected, the newborns of foreign-born black mothers had significantly higher incidence of SCD
compared to newborns of US-born black mothers. Additional analyses will focus on which black immigrant groups
have the highest incidence of SCD. Public health SCD education and community outreach activities can be targeted
to the most at-risk populations.
BS4-3: Burden of Sickle Cell Disease, Alpha-Thalassemia and Glucose-6-Phosphate Dehydrogenase

Deficiency Among Children in Western Kenya.
Parminder Suchdev MD, MPH; Laird Ruth MPH; Marie Early PhD; Alex Macharia; Thomas Williams MD, MPH
Background: Although inherited blood disorders such as sickle cell disease, alpha-thalassemia and glucose-6-
phosphate dehydrogenase (G6PD) deficiency are thought to be prevalent in Africa, there is limited data on their
prevalence and contributions towards childhood anemia.
Objectives: We aimed to determine the prevalence of inherited blood disorders (e.g., sickle cell, alpha-
thalassemia, G6PD deficiency, and haptoglobin 2-2 genotype) among a cohort of preschool children in western
Kenya. In addition, we assessed to what extent these disorders influence the prevalence of anemia and malaria
infection. Methods: The study was a cross-sectional survey of 858 children aged 6-35 months randomly selected
from 60 villages in western Kenya. Capillary samples were taken to assess hemoglobin (Hb), ferritin, malaria,
C-reactive protein (CRP), and retinol binding protein (RBP). Using PCR, Hb type, -3.7 kb alpha-globin chain
deletion, G6PD genotype, and haptoglobin genotype were determined. Isoelectric focusing from dried blood spots
was used to determine sickle cell status in those with insufficient blood volumes for PCR.
Results: Anemia (Hb<11.0 g/dL), iron deficiency (ferritin<12 µg/L) and malaria parasitemia were found in 71.6%,
27.2% and 32.5% of children, respectively. Nearly 2 out of 3 children had at least 1 blood disorder (sickle cell,
thalassemia, or G6PD deficiency). A total of 81.3% of children had normal Hb, 17.1% had sickle cell trait, and 1.6%
had sickle cell disease; 51.9% had normal alpha-thalassemia genotype, 38.5% were heterozygotes, and 9.6% were
homozygotes. Haptoglobin 2-2 genotype was found in 20.4% of children, and G6PD deficiency in 8.2% of males and
6.8% of children overall. There were no significant differences in the distribution of malaria by the measured blood
disorders, except males with G6PD deficiency, who were less likely to have clinical malaria compared to males
with normal G6PD genotype (p=0.005). After excluding children with malaria, inflammation (CRP>10 mg/L), iron
deficiency, or vitamin A deficiency (RBP<0.7 µg/L), there remained a significant difference in anemia among those
with normal alpha-thalassemia genotype (43.0%), heterozygotes (53.5%), and homozygotes (67.7%, p=0.03).
Conclusion and implications for public health practice: Inherited blood disorders are prevalent among
pre-school children in western Kenya and are an important contributor to anemia. G6PD deficiency in males is
associated with protection against clinical malaria.

BS4-4: Longitudinal Data Support the Utility of Newborn Screening for Alpha Thalassemia.
Ashutosh Lal MD; Carolyn Hoppe MD; Sylvia Titi Singer MD; Elliott Vichinsky MD
Background: The incidence of α thalassemia syndromes in California is 11.1 per 100,000 births compared to 15.2
per 100,000 births for sickle cell disease. Increase in α thalassemia disorders in North America has resulted in
proposals for universal newborn screening (NBS) for hemoglobin H disease.
Objectives: To utilize observations on natural history of hemoglobin H disease for the formulation of
public health policy.
Methods: Longitudinal clinical data were analyzed for hemoglobin H disease arising from deletion of 3 α globin
genes (HbH) and hemoglobin H Constant Spring (HCS).
Results: We identified 86 patients (48 through NBS) of which 60 (70%) had HbH, 23 (27%) had HCS and 3 had
other forms of hemoglobin H disease. Parental ethnicity was Asian (84%) and mixed (19%), with African-American
ethnicity in 15% of HbH. Growth was normal in HbH during first decade, but growth deficits began during infancy
in HCS. The mean height-for-age Z-score was lower in HCS (-1.29) compared with HbH (-0.43, p<0.001). Anemia
was more severe in HCS at all ages (P<0.001). The mean hemoglobin at 5 years was 9.4 g/dL (7.9-11.5 g/dL) in
HbH and 7.2 g/dL (3.8-8.7 g/dL) in HCS. We have not observed hemoglobin value <6.7 g/dL in 237 patient-years of
observation on 60 patients with HbH. The probability of receiving ≥1 transfusion by 20 years was 3% in HbH and
82% in HCS (P<0.001). Transfusions in HCS occurred in 13% infants and 50% children <6 years. Splenectomy
improved hemoglobin (P=0.012) and reduced transfusions in HCS. Iron overload documented by serum ferritin and
liver iron concentration developed early in HCS, but was delayed until the third decade in HbH.
Conclusion and implications for public health practice: Early diagnosis of hemoglobin H disease helps in
counseling, adopting strategies to avoid blood transfusion, and addressing growth deficits. Infants with HCS can
develop life-threatening anemia before a diagnosis can be made through conventional means. Many patients have
mixed ethnicity, implying the need for extending genetic counseling and NBS to populations traditionally considered
at low risk for hemoglobin H disease. Our data support the utility of a universal NBS program for alpha thalassemia.
BS5 Inhibitors in Hemophilia

BS5-1: UDC Inhibitor Pilot Study: A Review.

Fiona M. Kelly MPH; J. Michael Soucie PhD; Connie H. Miller PhD
Background: Persons with hemophilia (PWH) are deficient in a protein that is necessary for normal blood
clotting. As many as a third of PWH will develop an antibody (inhibitor) to the intravenous anti-hemophilic factor
products that are infused to stop or prevent a bleeding episode. Evaluation of risk factors for inhibitor development
is challenging due to the rarity of hemophilia and inhibitor development. In the United States, a public health
surveillance system called the Universal Data Collection (UDC) system was established by CDC in more than 125
federally supported specialized hemophilia treatment centers (HTCs) in 1998.
Objective: To determine the feasibility of implementing national inhibitor surveillance in the United States through
the UDC, specifically the inclusion of: centralized routine inhibitor monitoring, prospective collection of infused
product data, and genotype for all hemophilia A and B patients in the national UDC hemophilia surveillance system.
Methods: 12 hemophilia treatment centers (HTCs) enrolled patients with Hemophilia A and B from January 2006
through July 2009. Gene mutation analysis was performed after enrollment and blood specimens were assayed for
inhibitors annually, during a product switch, and when clinically indicated. Participants also logged each infusion
treatment on a data form, which was submitted to the HTC.
Results: 871 patients were enrolled during the pilot study. 1,639 inhibitor tests were performed and 829 patients
had mutation analysis performed. Follow-up time was 1,511.5 person-years. Infusion data was collected on 35,512
exposure days (n=671 patients). 5 inhibitor seroconversions were detected. It was demonstrated that it is feasible
to implement national inhibitor surveillance collecting the above information. However, it was determined that
prospectively collecting product exposure data and performing mutation analysis on a national basis was not cost-
effective. The UDC will begin implementing routine monitoring in a centralized laboratory in October 2011.
Conclusions and Implications for Public Health Practice: National routine monitoring of inhibitors among
hemophilia patients, using a standardized methodology, will demonstrate the incidence and prevalence of inhibitor
development in the United States. It will facilitate identification of risk factor models as well as to provide a
baseline for the evaluation of future interventions designed to reduce inhibitor development.
BS5-2: Infused Treatment Product Utilization Trends for Hemophilia A and B Patients in the UDC
Inhibitor Study.
Fiona M. Kelly MPH; J. Michael Soucie PhD; Connie H. Miller PhD; Sheree Boulet DrPH, MPH
Background: There is currently no evidenced based gold standard for hemophilia clinical management. The
multitude of mutations of the Factor 8 and 9 genes, disease severity levels ranging from <1% to 50%, and potential
for adverse events, has necessitated that hematologists individualize treatment, product and dosage, for each
patient based on their response. Prophylaxis has been demonstrated to improve joint scores and suggested to be
protective against inhibitor development. However, no study has prospectively characterized patient-reported
treatment utilization amongst a multi-center large sample size of hemophilia patients.
Objective: To characterize product utilization trends among hemophilia patients participating in the UDC Inhibitor
Pilot study. Specifically, to evaluate the occurrence of seasonal trends in patient reported infusions and potential
differences amongst treatment centers.
Methods: 11 hemophilia treatment centers (HTCs) located across the United States enrolled hemophilia A and B
patients into the UDC Inhibitor Pilot study from January 2006 through July 2009. Patients recorded data on each
infusion, specifically the date and time of treatment, product brand name, product lot number(s), vial amount(s),
reason for infusion, and if applicable the bleed locations and names of surgeries/outpatient procedures. Patient
reported treatment utilization was characterized by disease type, severity, product brand name and dosage infused,
type of treatment (episodic, intermittent prophylaxis, and continuous prophylaxis), gene mutation, and joint
scores.
Results: Infusion data was collected on 35,512 exposure days (n=671 patients). Preliminary results do not
illustrate seasonal variation in the average number of exposure days to infused treatment product for patients
when stratified by disease type and severity. Qualitative findings among hematologists participating in the study
indicate that there are variations in clinical management, specifically the utilization of continuous infusions for
outpatient/inpatient procedures.
Conclusions and implications for public health practice: This is the largest U.S. database of prospectively
collected patient-reported infusion information. The purpose of the database characterization is to facilitate

hemophilia clinical management by providing a review of current clinical practice among multiple
treatment centers nationwide.
BS5-3: Association of Immune Response Gene Polymorphisms with Inhibitors in Hemophilia Patients.
Amanda Payne MPH; Connie Miller PhD; Christopher Bean PhD; Meredith Pyle MS; Craig Hooper PhD
Background: Inhibitors to Factor VIII or Factor IX present a major complication to hemophilia treatment. Inhibitor
formation is a T-cell dependent process whereby cytokines are released, up-regulating expression of immune-
response genes and co-stimulatory molecules that results in induction of B-cell proliferation, differentiation, and
antibody production. Polymorphisms in immune-response-associated genes could be associated with increased risk
of developing inhibitors.
Objectives: We analyzed three polymorphisms in two immune-response-associated genes in order to evaluate
their association with increased odds of history of inhibitor development.
Methods: A subset (n=530) of patients enrolled in the Hemophilia Inhibitor Research Study were genotyped using
TaqMan® genotyping assays for two polymorphisms in the promoter region (-572 and -174) of Interleukin-6 (IL-6)
and one polymorphism in the promoter region (-308) of Tumor Necrosis Factor α (TNFα). Genotype frequencies
were determined using stratified analyses. For polymorphisms in the IL-6 gene, odds ratios for the effect of the
polymorphisms on odds of inhibitor history were computed using a recessive genetic model and adjusting for
race using multivariate logistic regression. An analysis of the interaction between IL-6 -174 and IL-6 -572 was
also conducted. The odds ratio for the TNFα polymorphism was computed using a dominant genetic model and
adjusting for race using multivariate logistic regression.
Results: IL-6 -174 was significantly associated with increased odds of having a positive history of inhibitor
development (OR: 1.64 [1.02, 2.65]). IL-6 -572 was not significantly associated with increased odds (OR: 0.99 [0.46,
2.14]). There was no significant statistical interaction between IL-6 -174 and IL-6 -572 (p=0.09). TNFα -308 was not
significantly associated with increased odds of having a positive history of inhibitor development (OR: 1.43 [0.82,
2.50]).
Conclusion and implications for public health practice: A polymorphism in the promoter region of IL-6
appears to be associated with increased odds of positive history of inhibitor. This polymorphism has been linked to
increased production of the immune-response-stimulating cytokine. This is the first report of its association with
inhibitor development. Understanding genetic predictors of risk of inhibitor could be important in determining the
optimal treatment for hemophilia patients.
BS5-4: The CDC Hemophilia A Mutation Project (CHAMP) F8 Mutation List: A New Online Resource.
Connie Miller PhD; Amanda Payne MPH; Fiona Kelly MPH; J. Michael Soucie PhD; Craig Hooper PhD
Background: Gene sequencing efforts in hemophilia populations in many countries have identified large numbers
of unique mutations in the factor VIII gene (F8). To aid in analysis and reporting of more than 1000 patient
genotypes collected in the U.S. inhibitor surveillance project conducted by the Centers for Disease Control and
Prevention (CDC), a current database of the more than 2000 F8 mutations reported was required.
Objectives: To develop a F8 mutation database for download and search available on the CDC web site and to
summarize key data.
Methods: Mutations were collected from HAMSTeRS and from 40 additional publications identified by systematic
literature review. Each mutation was reviewed and uniquely identified using the Human Genome Variation Society
(HGVS) nomenclature for coding DNA and predicted protein changes, as well as traditional nomenclature based on
the mature processed protein. Each mutation was given a single listing, including severity classified by ISTH criteria
from factor levels provided, reported severity, inhibitor history, and references. Mutations were linked to original
publications. An Excel file was created, which will be updated quarterly from literature and submitted reports.
Results: The list currently contains 2142 unique mutations, including 1091 missense mutations, 469 frameshift
mutations, and 251 nonsense mutations. A total of 972 mutations resulted in severe, 245 in moderate, and 354 in
mild disease. Variable severity was reported for 145 mutations (8.4%). Analysis of the compiled data documented
the low frequency of missense mutations in the B domain and showed that only 33.2% of missense mutations
resulted in severe disease, as compared to 86-88% of large structural changes, frameshifts, and nonsense mutations.
Inhibitors were reported with 294 mutations (18.6%) and were more prevalent with light chain mutations.
Conclusion and implications for public health practice: The CDC Hemophilia A Mutation Project (CHAMP)
Mutation List is a new resource available in Excel format at http://www.cdc.gov/hemophiliamutations, to be used by
researchers and clinicians wishing to learn about the many reported F8 mutations and how they affect patients.
BS5-5: Evaluation of a Fluorescence-Based Immunoassay to Detect Anti-Factor VIII Antibodies in

Patients with Hemophilia A.
Brian Boylan MS; Connie Miller PhD; Craig Hooper PhD
Background: Hemophilia A (HA) is an X-linked bleeding disorder characterized by the absence or dysfunction
of Factor VIII (FVIII). The most common treatment for HA is transfusion of either recombinant or plasma-derived
FVIII protein. Upon receiving a FVIII transfusion, approximately 30% of severely affected patients develop anti-
FVIII antibodies that inhibit FVIII function and/or facilitate immune dependent FVIII clearance. The development
of anti-FVIII antibodies, referred to as inhibitors, poses a major obstacle to effective management of bleeding for
the patient as well as a significant economic burden to the health care system due to the high cost of alternative
therapies. Current laboratory techniques used to detect FVIII inhibitors measure the degree to which patient
plasma inhibits FVIII function in clotting (Bethesda) or chromogenic assays. These assays are widely used and are
valuable tools for the detection of inhibitors in HA patients, but they do not directly measure the presence of anti-
FVIII antibodies and may not detect antibodies that are low titer or non-function blocking.
Objectives: The goal of the current study is to develop a fluorescence-based immunoassay (FLI) to directly detect
anti-FVIII antibodies in the plasma of HA patients.
Methods: Plasma was diluted 1:100 and incubated with Luminex polystyrene beads coupled to recombinant FVIII.
Patient antibodies directed against FVIII were detected by incubating the beads with biotinylated anti-human
IgG/M followed by phycoerythrin conjugated streptavidin.
Results: There was a high degree of agreement among the FLI, the Bethesda, and the chromogenic assays for
FVIII inhibitors. 32 of 38 (84%) patient samples positive by the Bethesda method were also positive on the FLI and
19 of 22 (86%) samples positive by the chromogenic assay were positive by FLI.
Conclusion and implications for public health practice: The FLI for the detection of FVIII inhibitors in HA
patients described in the current study is a sensitive method requiring small sample volumes to directly detect
anti-FVIII antibodies in the plasma of HA patients. Upon further development, the high level of sensitivity achieved
with this method may allow for early detection of anti-FVIII antibodies and serve as a predictor for inhibitor
development in patients with HA.

BS6 Health Education, Health Promotion, and Health Communication for

People with Blood Disorders
BS6-1: Building a Provider Organization for the Technological Age: Improving Lives of Women with
Blood Disorders.
Evelyn Lockhart MD; Ann-Marie Nazzaro PhD; Lauren Daitch MPH
Background: Women and girls face greater risks of complications from blood disorders due to menstruation,
pregnancy and menopause. For example, pregnancy and the postpartum period (up to six weeks after delivery)
increase women’s risk of venous thromboembolism (VTE) 4- to 5-fold. With thrombophilia, found in 20 to 50%
of women who experience VTE during pregnancy and postpartum, risk is substantially heightened. Diagnosis,
management and treatment of women with all blood disorders require a multidisciplinary approach. Women
interface with different physicians at every life stage. At present the infrastructure is not in place to link the
multiple disciplines with consistent, accurate, quality education specifically on blood disorders affecting women
and girls. The fallout of fragmentation in information is evidenced in: the CDC finding that 16 years is the average
time it took for women with von Willebrand disease (VWD)—the most prevalent bleeding disorder—to receive an
accurate diagnosis; and Sickle Cell Disease, where medical risks and pregnancy complications for the mother are
little understood. Serious gaps exist across women’s blood disorders.
Objectives: Strengthen communication and networking, and create new linkages—across specialties—among
groups representing physicians and healthcare providers build a platform to connect, educate and exchange best
practices among the multiple disciplines providing healthcare to women and girls.
Methods: In 2010, the Foundation for Women & Girls with Blood Disorders (FWGBD) was launched to serve as a
single site, single source where physicians and healthcare providers can obtain education and information. FWGBD
is a virtual organization, exploiting the latest communication technologies to achieve its vision—all women and
adolescent girls with blood disorders are correctly diagnosed and optimally treated and managed at every life stage.
A primary strategy, FWGBD’s state-of-the-art Web site, links physicians and healthcare providers and educates
them about blood disorders in women and girls. Innovative features, including Ask the Expert and live and archived
Webinars, will be demonstrated.
Results: Evaluation tools/metrics, developed to assess the various features, will be detailed.
Conclusion and implications for public health practice: Improving the communication and education
network for doctors and healthcare providers directly benefits the health of women and girls with blood disorders.
Educating providers will change women’s lives.
BS6-2: Young Women and Bleeding Disorders: Increasing Awareness.

Patricia Rhynders PhD, MPH, CHES; Fred Fridinger DrPH, CHES; Cynthia Sayers BA; Patrice Flax MS, MSW; Michele Salomon JD; Sally
McAlister BSN; Kathleen Roach MPH, MBA
Background: Bleeding disorders in women are an underestimated public health problem that, if undiagnosed, can
diminish quality of life and cause life-threatening complications during menstruation, childbirth, and surgery.
Objectives: In 2010, CDC and the National Hemophilia Foundation commissioned an online survey through
Harris Interactive to gather baseline information on awareness of, knowledge about, and experiences with heavy
menstrual bleeding (menorrhagia) in young women ages 18-25, and to determine the preferred messaging strategy
for presenting credible health information about bleeding disorders.
Methods: The survey was conducted on a nationally representative sample of 1,243 women ages 18-25.
Results: A relatively high number of women reported experiencing symptoms suggestive of a bleeding disorder,
yet few women were aware of the symptoms. When asked what they would do if they thought they had a bleeding
disorder, 7 in 10 (68%) said they would be extremely or very likely to see a healthcare professional. Survey results
indicated that gain-framed statements would have more impact than loss-framed statements. The most compelling
messages for the survey respondents were those that focused on the fact that treatment is available, getting
bleeding under control can help negate future pregnancy and fertility issues, and young women can have a work
and school life that is not disrupted by heavy periods.
Conclusion and implications for public health practice: For many women, awareness of and knowledge about
bleeding disorders is absent, resulting in a situation in which lack of information is a far greater problem than
misinformation. By increasing awareness of bleeding disorders in women, the expected public health impacts are to
encourage early diagnosis and treatment of bleeding disorders and to prevent or reduce the morbidity associated
with bleeding disorders in this population. The development of health communications materials focused on gain-
framed statements can help encourage symptomatic young women to seek diagnosis and treatment. These survey
findings and corresponding recommendations align with national health goals set through Healthy People 2020 as
well as with CDC’s Health Protection goal for women—working to promote the health, safety, and quality of life of
women at every life stage.
BS6-3: FitFactor – Providing Physical Activity and Nutrition Education Online.

Faith Hunter MBA, ERYT; Gretchen Simmons MPH, MCHES; Michelle Burg BBA; Kimberly Haugstad MBA
Background: Keeping joints as healthy as possible is an important consideration for individuals with hemophilia.
The most disabling complication of hemophilia results from hemorrhage into the joints and muscles of the arms and
legs. With repeated bleeding into the same joint, damage occurs to the cartilage and bony structure of the joint. This
predisposes the limb to additional trauma from normal activities with resultant hemorrhage and greater chronic
disability. Research has shown that being physically active is extremely important for a person with hemophilia.
Exercise can reduce and prevent bleeding episodes by strengthening the muscles surrounding vulnerable joints.
Objectives: To improve the health of people with hemophilia by promoting physical activity and proper nutrition.
Methods: In September 2009, HFA began working under a cooperative agreement with the Centers for Disease
Control and Prevention (CDC) to develop FitFactor, an online program that encourages and promotes a healthy
lifestyle among people with hemophilia through physical activity and nutrition. The program includes physical

activity videos and educational posts, nutritional plans, dietary facts, healthy recipes and wellness resources. Self-
administered baseline and follow-up surveys have been designed to collect data on program outcomes.
Results: The videos include physical activities, such as yoga stretches, swimming, and cycling. Each topic featured
includes 3-5 clips that are 1-3 minutes in length. The video clips highlight low-to-moderate impact exercises, and
do’s and don’ts on the topics selected by staff and physical therapy experts. Nutritional meal plans have been
designed by a licensed nutritionist. The plans have been tailored for adult men and families, and focus on low-
cost meals. The plans include two options each for breakfast, lunch, dinner and snacks. The site will also highlight
physical activities of hemophilia community members, provide short articles on fitness and nutrition, and list
online wellness resources. The site will be promoted through social networks, national and state bleeding disorders
meetings and conferences, and HFA member organizations and Hemophilia Treatment Centers. Conclusion and
implications for public health practice: The FitFactor online program aims to improve health, fitness, and quality of
life of individuals with hemophilia by encouraging daily physical activity and proper nutrition.
BS6-4: Bridging the Cultural Divide: Development of Steps for Living, An Online Life Stages
Education Program.
Ayana Woods MPH; Jennifer Crawford MPH; Gretchen Simmons MPH, MCHES; Cynthia Sayers BA
Background: Patients with limited understanding of the English language are often unable to communicate their
health care needs or access appropriate prevention messages. Studies have shown that patients with language
barriers suffer adverse outcomes: they are less likely to access preventive care, less likely to have a usual source for
medical care, and have an increased risk of non-adherence to medication--all of which can be disastrous for people
with bleeding disorders.
Objectives: To describe resources developed by the NHF and CDC geared at reducing health disparities due to
language barriers.
Methods: In October 2009, NHF began working under cooperative agreement to CDC to develop Steps for Living,
a multi-component multicultural program that includes several valuable resources that will be available, in both
English and Spanish, to people with bleeding disorders.
Results: The My HTC and Me/Mi CTH y Yo coloring book, printed in English and Spanish, was developed to help
introduce the idea of comprehensive care to young children, reduce fear of the unknown and provide an activity
for children and parents to do together while waiting for medical appointments. The Guidelines for Growing are a
series of age-specific (birth-4, 5-8, 9-12, 13-15, and 16-18) brochures available in English and Spanish designed to
complement MASAC’s Transition Guidelines—giving parents and providers a sense of when appropriate transitions
should happen in the life of a patient. Each brochure focuses on social and developmental milestones specific
to the general age range of a child or young person with a bleeding disorder. And the Steps for Living web site
intended to be mirrored in Spanish has been designed to be a continual resource for patients as they learn to
manage their bleeding disorder through all of the life stages.
Conclusion and implications for public health practice: These resources are aimed at reducing the disparities
regarding access to information to reduce the secondary complications of having a bleeding disorder by reducing
the language barrier for Spanish language speakers. With additional funding, materials could be translated into
other languages to reach even greater numbers of affected people.
BS6-5: On Line Education Program Designed for Specific Life Stages.

Chad Feay BA; Jennifer Crawford MPH; Gretchen Simmons MPH, MCHES; Cynthia Sayers BA
Background: Living with a bleeding disorder can alter the experience of childhood, young adulthood and aging
for individuals and their caregivers alike. Relationships, family life, friendships, decisions about sports, school,
well-being, self-confidence — can all be profoundly affected. Parents of children newly diagnosed with a bleeding
disorder face an added dimension of complexity and challenge beyond the already demanding tasks of being a new
parent. Additionally, adolescents with chronic conditions face increased social isolation and often more severe
health outcomes than that of their peers. Older adults face an increased complication of finding nursing home that
will manage a bleeding disorder among the other complicated health issues of aging.
Objectives: Describe a program that provides online education, access to social support, and accurate information
in a life-stages approach to assist those affected by bleeding disorders.
Methods: In October 2009, NHF began working under cooperative agreement to CDC to develop Steps for Living,
an online program with information and resources targeted directly to three main audiences: consumers, chapters,
and providers. NHF is also developing a database of activities for chapters to implement peer to peer programming
in local areas, increasing social support for people of all life stages.
Results: First Step (for ages 0-8) focuses on the basics of bleeding disorders, negotiating parent/provider
relationships, and childcare issues. Next Step (for ages 9-15) covers working with schools; gaining independence
at home; and healthy decision making. Stepping Out (for ages 16-25) covers disclosure, dating, career choices,
moving away to college, and adherence. And Healthy Aging will cover topics such as managing co-morbidities,
planning for end of life care, navigating health insurance and routine diagnostic procedures for people with
bleeding disorders. Information will be available in various user-friendly formats, including videos, pop-up surveys
and interactive graphics. Chapters and Hemophilia Treatment Centers will be trained and provided with sample
activities to implement with consumers that will provide opportunities for peer-to-peer education, mentoring, and
support.
Conclusion and implications for public health practice: This first of its kind, online life-stages program will
expand access to this information and be a model for other chronic conditions.
BS7 Venous Thromboembolism — Complications And Risk Factors

BS7-1: Bleeding and Thrombotic Complications Associated with CYP2C9 and VKORC1 Polymorphisms
Among Blacks on Warfarin Therapy.
Fatima D. Mili MD, PhD; Tenecia A. Deans MD; Craig Hooper PhD; Paula M. Weinstein MD; Cathy Lally MSPH; Harland Austin DSc;
Nanette K. Wenger MD
Background: Although the association between CYP2C9 single nucleotide polymorphisms (SNPs) and bleeding or
thrombotic complications has been well studied among Blacks on warfarin, only a limited number of VKORC1 SNPs
have been assessed in this population characterized by a great genetic diversity.
Objective: To investigate the association between bleeding or thrombotic complications and selected CYP2C9 and
VKORC1 SNPs among Blacks on warfarin.

Methods: We conducted a prospective study at an outpatient anti-coagulation clinic in Atlanta from 02/2005 to
10/2006 and enrolled 230 Blacks ≥18 years old on warfarin therapy for at least 3 consecutive months. We used Cox
regression models to determine whether bleeding or thrombotic events were associated with 4 CYP2C9 SNPs and
18 non-coding VKORC1 SNPs identified by re-sequencing.
Results: Our preliminary results indicated that the risk of bleeding was strongly increased among Blacks aged ≥55
years with CYP2C9*2 (hazard ratio at 1 year (HR1 year) = 9.0 [95% CI 1.7-46.8; p = 0.009]) as well as the risk of
thrombosis among all patients with CYP2C9*3 (HR1 year = 9.1 [95% CI 1.1-79.0; p = 0.044]). Other associations
were not statistically significant, specifically, the increased risk of bleeding among all patients with CYP2C9*3 (HR1
year = 5.1 [95% CI 0.66-38.9]), among patients aged <55 years with VK6915T>C (HR1 year = 1.9 [95% CI 0.20-
18.4]), and among females with VK8773C>T (HR1 year = 2.2 [95% CI 0.30-15.3]), as well as the increased risk of
thrombosis among females (HR1 year = 5.3 [95% CI 0.55-50.8]) and among patients aged ≥55 years (HR1 year = 2.4
[95% CI 0.43-14.1]) with VK8773C>T.
Conclusion and public health implications: Our pilot study confirmed the association between bleeding and
CYP2C9*2, and between thrombosis and CYP2C9*3 among Blacks. Our results also revealed that Blacks with
VK6915T>C or VK8773C>T might be at risk for complications related to warfarin, although the associations
were not statistically significant. Future research could include a prospective study with a larger sample size to
achieve adequate power and detect statistically significant risk of complications among patients with VKORC1
polymorphisms. Such a study would be a reference for the development of dosing protocols designed to reduce the
risk of complications associated with warfarin among Blacks.
BS7-2: Characteristics of Cancer Associated Venous Thromboembolism in the Multicenter CDC

Thrombosis Network Registry.
Imran Khan MD/PhD; Ambarina Faiz MD, PhD; Michele Beckman MPH; Kristy Kenney MPH; Paula Bockenstedt MD; John Heit MD;
Roshni Kulkarni MD; Marilyn Manco-Johnson MD; Stephan Moll MD; Thomas Ortel MD, PhD; Claire Philipp MD
Background: Venous thromboembolism (VTE) is a common and severe complication of cancer (ca).
Objectives: The objective of this study was to describe clinical characteristics of adults with cancer and non-
cancer associated VTE in CDC Thrombosis Network Centers.
Methods: There were 2801 consenting VTE patients including 296 cancer patients entered into the registry from
September 2003 to June 2010. 156 patients with inactive ca within 3 months of VTE were excluded. Data from
2505 without ca and 140 with ca within 3 months of VTE diagnosis were analyzed.
Results: Common types of cancers found in VTE patients were: gyn (19%), GI (16%), breast (13%), hematologic
(13%), GU (12%), lung (11%), head & neck 4% and others 12%. 32% ca patients underwent chemo/radiation
therapy within 3 months of VTE diagnosis. Cancer patients were older at time of VTE diagnosis (52.4 ± 16.4 yrs
vs 40.8 ± 15.6 yrs, p <0.0001). 70% ca patients were ≥ 45 yrs at VTE diagnosis compared to 37% non-cancer
patients. Gender and racial distributions were similar in the two groups. There was less trauma associated VTE and
more surgery associated VTE in cancer patients than non-cancer patients but the difference was not statistically
significant. Thrombophilia was less common in ca group (10% vs 25%, p<0.0001) with no significant difference
in family history of VTE. There were no significant differences in distribution of deep vein thrombosis (DVT),
pulmonary embolism (PE), or combined DVT/PE in the two groups. Upper extremity (15% vs 10%, p=0.03), SVC
(1.4% vs 0.4%, p=0.15) and IVC (3.6% vs 1.3%, p=0.04) DVTs were more common among ca patients. Non-cancer
patients had more CNS venous thrombosis (3% vs none, p=0.05). 4% ca patients vs 2% non ca patients (p=0.05)
had catheter associated DVT but there was no difference in catheter related upper extremity DVT between cancer
and non cancer patients (24% vs 11%, p=0.15). OC use was more common in non-ca women (12% vs 2%, p =0.006)
but hormone replacement therapy was more common in ca women (7% vs 2%, p=0.01).
Conclusion and implications for public health practice: This study demonstrates significant differences in
characteristics of cancer and non-cancer associated VTE patients utilizing a multicenter thrombosis registry.
BS7-3: Is Polycystic Ovary Syndrome a Risk Factor for Venous Thromboembolism?

Ekwutosi Okoroh, MD
Objective: We determined the prevalence of venous thromboembolism (VTE), in women with and without
polycystic ovary syndrome (PCOS).
Study Design: We performed a cross sectional study with MarketScan Commercial databases for the years
2003–2008. We assessed the prevalence and risk of VTE among women with and without PCOS using age-stratified
multivariable regression models.
Results: The prevalence of VTE was 374.2 per 100,000 for women with PCOS and 193.8 per 100,000 for women
without PCOS. Prevalence ratio (3.0; 95% CI, 2.40–3.74) and odds (3.3; 95% CI, 2.61–4.08) of having VTE was
highest in women aged 18–24 with PCOS compared to women aged 18–24 without PCOS.
Conclusion: Prevalence of VTE was higher in women with PCOS compared with women without PCOS and women
aged 18-24 with PCOS appear to be at increased risk for having VTE.
BS7-4: Prevalence of Bleeding in Thrombophilia Patients with Pulmonary Embolism.

Jimmy C. Liu MD; Charity G. Moore PhD, MSPH; Diane M. Comer BA; Margaret V. Ragni MD, MPH
Background: Venous thromboembolism is a major public health problem associated with significant morbidity
and mortality. Recent studies indicate that individuals with thrombophilia, in particular those heterozygous for
the factor V Leiden (FVL) mutation, have decreased severity of pulmonary embolism (PE), as compared to
non-carriers. Further, while VTE recurrence risk is increased in FVL, the bleeding risk is lower, i.e. at surgery,
delivery, and postpartum. Few data exist on bleeding during anticoagulation (AC) in such individuals. As CHEST
2008 guidelines suggest duration of AC for unprovoked venous thromboembolism (VTE) should be based on a
balance between VTE recurrence risk and AC bleeding risk, we hypothesized if AC bleeding risk were lower in
thrombophilia, longer duration AC might be considered.
Objectives: We compared the frequency of anemia, major bleeding, predictors of bleeding (RIETE), and severity
of illness in thrombophilia patients hospitalized for PE.
Methods: The frequency of anemia and major bleeding were compared in PE discharges with thrombophilia
(PE+T) and without thrombophilia (PE-T) from statewide PE discharge data from the Pennsylvania Health
Care Cost Containment Council (PHC4), 2001-2006. Clinical data were specified by ICD-9 codes for PE/DVT,
thrombophilia, anemia and major bleeding. Length of stay, Atlas severity of illness, and in-hospital mortality
were collected.
Results: Among 66,975 PE discharges, 2001-2006, 1048 (1.6%) had thrombophilia. Compared with PE-T, PE+T
were younger, 51.0±17.5 vs. 64.9±17.0 yr, p<0.0001, more likely male, 46.0% vs. 42.6%, respectively, p=0.030,
but of similar race, 84.6% vs. 86.3% Caucasian, p=0.135. Among PE+T, anemia was less common, 5.5% vs. 7.5%,

p=0.014, and major bleeding was marginally so, 6.4% vs. 8.0%, p=0.060, although RIETE predictors of bleeding
did not differ between groups, 1.7% vs. 1.9%, p=0.730. Among PE+T, severity of illness was lower, 7.7% vs. 24.6%,
p<0.0001, which persisted after controlling for anemia or major bleeding, each p<0.0001. Length of stay was
shorter, 7.7±6.4 vs. 8.9±9.4 days, p<0.0001, and in-hospital mortality was lower, 2.9% vs. 8.2%, p<0.0001.
Conclusion and implications for public health practice: Lower prevalence of anemia, major hemorrhage
(marginal), length of stay, severity of illness, and in-hospital mortality in PE discharges with thrombophilia suggest
the risk of longer duration anticoagulation may be lower. More data are needed to confirm these findings.
BS7-5: Trends in Venous Thromboembolism Among Pregnancy Hospitalizations in the U.S., 1994-2008.
Nafisa Ghaji MBBS, MPH
Background: Venous thromboembolism (VTE) during pregnancy is associated with acute and long-term morbidity
and mortality. While some studies have evaluated trends in pregnancy-related VTE over the past few decades,
recent trend data have not been evaluated. Furthermore, temporal trends in the prevalence of co-occurring
conditions have not been documented in a national sample.
Objectives: To characterize trends in pregnancy hospitalizations with VTE during 1994-2008 in a nationally
representative sample.
Methods: The study included all pregnancy-related hospitalizations with VTE among women 15-44 years of age
in the Nationwide Inpatient Sample (1994-2008). Pregnancy related hospitalizations and VTE diagnoses were
identified using International Classification of Diseases, Ninth Revision (ICD-9) diagnostic codes, procedure codes
and diagnostic related group codes. Antenatal, delivery, and postpartum hospitalizations were evaluated separately.
All estimates accounted for the complex sampling design.
Results: From 1994-1996 to 2006-2008, there was a 22% increase in the rate of antenatal hospitalizations with
VTE (from 1.89 to 2.21 per 1,000 deliveries) and a 50% increase in post=partum hospitalizations with VTE
(from 0.41 to 0.62 per 1,000 deliveries); delivery hospitalizations with VTE were constant over the time period.
Concurrent increases in the prevalence of co-morbidities were also observed among women with VTE-related
pregnancy hospitalizations. For example, obesity increased 3.0% to 7.4% among antenatal hospitalizations
with VTE. There was also an increase in diabetes (6.6% to 8.8%), chronic heart disease (5.6% to 8.6%), and
hypertensive disorders (9.6% to 12.7%) among delivery hospitalizations with VTE and an increase in anemia from
20.9%-29.9% in the postpartum hospitalizations with VTE.
Conclusion and implications for public health practice: Pregnancy associated VTE hospitalizations have
increased from 1994-2008. The observed trend may be due to concomitant increases in co-morbid conditions
such as heart disease, hypertensive disorders, and diabetes. These findings are important for design, planning and
implementation of programs which focus on reduction of maternal morbidity and mortality.
BS8 Hemoglobinopathy Complications

BS8-1: Sickle Cell Disease in Pregnancy: Maternal and Fetal Outcomes in a Medicaid-Enrolled
Population.
Sheree Boulet DrPH; Ekwutosi Okoroh MD; Althea Grant PhD; Ijeoma Azonobi MD; Craig Hooper PhD
Background: Higher frequencies of adverse perinatal outcomes have been reported among women with SCD
compared with those without SCD; however, past studies are limited by small sample size, narrow geographic area,
and use of unlinked hospital discharge data.
Objectives: To compare the probability of adverse maternal and fetal outcomes among women with SCD and those
without SCD.
Methods: Data from the 2004-2009 Thomson Reuters MarketScan® Multi-State Medicaid databases were used to
assess the prevalence of adverse maternal outcomes among intrapartum and postpartum women with SCD. The
analysis was restricted to women 15-44 years of age whose race was reported as black. Delivery hospitalizations
were identified using ICD-9-CM codes for pregnancy-related diagnoses or procedures; records associated with
hydatidiform mole, ectopic pregnancy, other abnormal products of conception, or abortion were excluded. The
postpartum period included the first 12 weeks after the index delivery hospitalization. SCD diagnoses were
identified by ICD-9-CM codes (282.6x, 282.41, 282.42) recorded in an inpatient claim or 2 outpatient claims ≥30
days apart. Multivariable log-binomial regression models were used to calculate adjusted prevalence ratios for a
range of perinatal outcomes for women with SCD compared with women without SCD and a delivery hospitalization
lasting ≤2 days and women without SCD who were hospitalized for >2 days or were transferred to another facility.
Results: Of the 295,554 deliveries to black Medicaid-enrolled women during 2004-2009, 1,305 had a diagnosis of
SCD (4.4 per 1,000). After adjusting for age, the prevalence of heart disease, lung disease, renal disease, sepsis,
pneumonia, urinary tract infection, venous thromboembolism, cerebrovascular disorders, eclampsia, seizure
disorders, anemia, and fetal growth restriction was higher among women with SCD than among women in both
comparison groups. Compared with women without SCD and a hospital stay ≤2 days, women with SCD were more
likely to have hypertension, pyelonephritis, placental abruption, and preterm labor.
Conclusion and implications for public health practice: The present findings suggest that SCD in pregnancy
is associated with an increased risk of adverse maternal and fetal outcomes. Further research is needed to
determine whether targeted preconception health interventions reduce the risk of pregnancy complications for
women with SCD.
BS8-2: Preoperative Transfusion Practices and Outcomes in Sickle Cell Patients Admitted to
California Hospitals.
Susan Claster MD; Sheree Schrager MS, PhD; Vanessa Guzman BA; Julie Wolfson MD, MSHS; Ellen Iverson MPH
Background: Surgery in patients with Sickle Cell Disease (SCD) is associated with a high rate of postoperative
acute chest syndrome (ACS). In 1995, a study conducted at US SCD centers showed that preoperative transfusion
reduced the rate of postoperative ACS to 10%.

Objectives: To understand the transfusion practices and outcomes in our state, we queried California’s statewide
hospital discharge database (OSHPD) to describe the frequency of preoperative transfusions for SCD patients and
the frequency of ACS following surgery.
Methods: This study used 2005-2008 public OSHPD data. Patients were included based on the presence
of an ICD9 diagnosis code for sickle cell disease in the primary or a secondary diagnosis and procedure code
for one of six common surgical procedures performed in SCD: tonsillectomy, cholecystectomy, splenectomy,
hysterectomy, therapeutic abortion, and hip arthroplasty. Frequencies were described for transfusion,
ACS diagnosis, and mortality.
Results: Between 2005 and 2008, 468 visits were associated with one of the six procedures. 222 cases (47.4%)
were associated with a transfusion. Of the 179 cases in which the timing of transfusion could be determined,
145 visits (81%) were associated with a preoperative transfusion, and 34 visits (19%) were associated with a
postoperative transfusion. Fifty-nine of the 468 surgical patients developed ACS (12.6%). Of the 222 transfused
patients, forty-three developed ACS (19%). There were sixteen ACS cases in the 246 nontransfused patients
(6.5%). There were four deaths: three of those patients had been transfused and developed ACS.
Conclusion and implications for public health practice: Over half of the SCD patients in California are not
preoperatively transfused. Most patients who were transfused received preoperative transfusions. The frequency
of ACS was lower in the non-transfused group, in line with this group having less severe disease. The frequency of
ACS in transfused patients was nearly twice that of the study performed in academic sickle cell centers in 1995.
These results suggest that many patients are not receiving what is considered standard preoperative treatment by
many sickle cell providers in the US; this is consistent with the notion that many California patients receive care
outside of a center and may have poorer outcomes.
BS8-3: Healthcare Utilization and Treatment of Priapism in SCD and non-SCD patients.
Ashish O. Gupta MD, MPH; Marike Vuga PhD; Lakshmanan Krishnamurti MD
Background: Priapism is a common complication in patients with sickle cell disease (SCD) and is associated
with increased risk of loss of erectile function. There are however, limited data on the health care utilization and
treatments adopted for this condition.
Objective: To determine healthcare utilization and treatment of priapism in patients with SCD.
Methods: Data from Nationwide Inpatient Sample (NIS), a part of the Healthcare Cost and Utilization Project
(HCUP) and the largest all-payer inpatient database in the United States that gives a stratified probability sample
of 20% of all hospital discharges was analyzed using the International Classification of Diseases, 9th Revision,
Clinical Modification codes for priapism (ICD-9 code 607.3). NIS database for 2007 was analyzed for healthcare
utilization, associated common procedures and associated co-morbidities for both SCD and non-SCD patients with
priapism using SAS (v.9.2) statistical software.
Results: In 2007, discharges for priapism as one of all listed diagnoses, primary diagnosis and secondary diagnosis
were 2703, 1211 and 1492 respectively. Among discharges with SCD, priapism as one of all listed, primary
diagnosis and secondary diagnosis, was 1139, 322, 817 respectively. In SCD with priapism average length of stay
was 5.81 + 1.54 days and age distribution was 19-44 years (91.1%), 0-18 years (27.2%), and 45-64 year (3.6%).
SCD represented 25% of the aggregate hospitalization cost of USD 21 million in patients with priapism with a
mean charge of USD 16,800 per discharge. Procedures in SCD patients with priapism included red cell blood
transfusion484 (36.7%), exchange transfusion 83(7.2%) and aspiration and irrigation 206 (18%) . Vasocclusive
crises (n=873, 76.6%), avascular necrosis of hip (n=62, 5.4%) and acute chest syndrome (n= 68, 5.9 %) were
reported comorbidities in discharges with SCD and priapism. In discharges with priapism and SCD frequency of
concurrent hypertension (n=106, 9.3%), substance abuse (144, 12.7%) and tobacco abuse (n=155, 13.6%) was
significantly higher (P<0.05) than in those with priapism without SCD.
Conclusion and implications for public health practice: We describe hospital utilization for priapism and SCD
in the United States. Blood transfusion and aspiration irrigation were the commonest procedures and vasocclusive
crisis, substance or tobacco abuse and hypertension, the commonest co-morbidities.
BS8-4: Transfusion Related Complications in Patients with Thalassemia.

Suchitra Sundaram MBBS; Ruchika Goel MD, MPH; Lakshmanan Krishnamurti MD
Background:Red blood cell transfusions are the cornerstone of treatment of Thalassemia but are associated with
several complications. The burden of these complications is poorly defined.
Objectives: To determine burden of complications of transfusion and iron overload in hospitalized patients with
Thalassemia in the United States.
Methods: We analyzed National Inpatient Sample (NIS) database sponsored by Agency for Health Care Quality
& Research. This is a stratified probability sample of 20% of all hospital discharges among U.S. community
hospitals (n=1,044, sampling universe = 90% of all such discharges). Sampling weights were applied to represent
all community hospital discharges in the US for the year 2007. Using the ICD-9-CM code 282.49 we determined
the number of patients in whom Thalassemia was the primary or one of all listed diagnoses. To avoid inclusion
of patients with forms of Thalassemia not requiring transfusions, we limited further analysis to those discharges
who received blood transfusion during the hospitalization. We determined the weighted frequency & percentage
+/-Standard Error for various transfusion and iron overload related complications. When frequencies were too low
to be reported (<10), they are indicated by (*) as per NIS policy.
Results: Out of 754 discharges with Thalassemia as primary diagnosis, 376 underwent PRBC transfusions. Of
25,880 patients with Thalassemia as one of all listed diagnosis, 4523 had PRBC transfusions. In decreasing order,
weighted frequency( percentage+/- standard error) of different complications in the primary diagnosis group were:
hemochromatosis including bronze diabetes; 83 ( 22+/-5.92), hypothyroidism; 35 ( 9 +/-3.96), cirrhosis; 6 (1.48+/-
1.48), hypogonadism; 4 ( 1.10+/-0.11), hepatitis C; 4 (1.03+/-1.04), hypoparathyroidism; (*), cardiomyopathy;
(*), hepatitis B; (*), HIV; (*), hepatocellular carcinoma; (*), while in the one of all listed diagnoses group they
were: Hypothyroidism: 485 (11+/-1.10), hemochromatosis; 153 (3.40+/-0.86), cirrhosis; 73 (1.61+/-0.45), hepatitis
C; 62 ( 1.36+/-0.44), HIV; 34 ( 0.75+/-0.32), cardiomyopathy; 27 ( 0.60+/-0.24), hypogonadism; 8 (0.18+/-0.18),
hypoparathyroidism; 5.55 ( 0.12+/-0.12) , hepatitis B; 5 ( 0.10+/-0.10), & hepatocellular carcinoma; (*).
Conclusion and implications for public health practice: We describe the burden of transfusion and
iron overload related complications in hospitalized patients with Thalassemia. In descending order of frequency
the complications are hemochromatosis, hypothyroidism, cirrhosis, hypogonadism, hypoparathyrodism,
hepatitis C and hepatitis B.

BS8-5: Clinical Predictors Of All-Cause In-Hospital Mortality In Patients With Sickle Cell Disease in
United States- First Reported Results From A Nationally Representative Sample.
Ruchika Goel MD, MPH; Ashish Gupta MD; Lakshmanan Krishnamurti MD
Background: Predictors of mortality in SCD remain largely undefined and under-explored. In 2000, CSSCD
proposed dactylitis, severe anemia and leukocytosis as predictors of death in SCD. Recently, demographic
predictors of in-hospital mortality including hospital volume, hospital teaching status, and patient socioeconomic
status were proposed. However, no study has explored the clinical predictors of in-hospital mortality in patients
with SCD.
Aim: This study aims to explore the various clinical predictors of all-cause mortality in hospitalized SCD patients
using a nationally representative database.
Methods: We used the Nationwide Inpatient Sample (NIS) database for the study. NIS is a stratified probability
sample of 20% of all hospital discharges among U.S. community hospitals (n=1,044, sampling universe = 90% of
all such discharges) sponsored by the Agency for Health Care Quality and Research. Only data on SCD related
hospitalizations and mortality were analyzed using ICD-9 codes. Sampling weights were applied to represent all
community hospital discharges in the US for the year 2007. Univariate and multivariable logistic regression was
performed. A 2-sided p-value of <0.05 was considered significant.
Results: In 2007, there were 166,084 admissions with a diagnosis of SCD. Of these, 86,318 discharges had SCD
as the primary diagnosis upon admission. Males represented 37.5% of SCD related hospitalizations. There were
a total of 844 deaths reported in the above admissions with an all-cause in-hospital mortality rate of 0.5%. Of
these, 420(49.7%) were females. In the multivariable logistic regression model, the following clinical factors were
independently associated with statistically significantly higher odds of mortality: Male gender, every ten year
increase in age, history of at least one PRBC transfusion, history of exchange transfusion, diagnosis of acute chest
syndrome and development of sepsis during the admissions (Table 1). On univariate analysis, history of mechanical
ventilation (either non-invasive or invasive) was also a highly significant independent predictor of mortality
[estimated OR (95% CI) = 120.9 (82.7-176.9)]. Conclusion: This study proposes for the first time, a set of clinical
factors which are independent predictors of all –cause mortality in hospitalized patients with SCD. We propose
that early and targeted aggressive therapy based on the presence of these factors should guide the management of
hospitalized SCD patients for improved mortality.
BS9 Social Studies In Hemoglobinopathies

BS9-1: Social Science and Sickle Cell/Thalassaemia: Three Conceptual Models.

Simon Dyson PhD
Background: Sickle cell disease (SCD) and thalassaemia are serious inherited blood disorders that involve social
challenges both for those living with the conditions and for health professionals serving those communities.
Objective: To explore the potential contribution of social science to improving the lives of those living with sickle
cell and thalassaemia through an examination of the application of the social model of chronic illness, the social
model of identity formation and the social context of illness experience at school.
Methods: A review of key social theories and their application to the issues facing people living with
SCD or thalassaemia..
Results: The social model of disability and chronic illness, outlined by the British sociologist rights author Michael
Oliver1 can be applied to help to understand how we might best consider, for example, evidence of the relative
risks of pregnancy in sickle cell disease, suggesting that appropriate benchmarks may need to be set in terms of
what could be possible, that is as counter to the current “facts”. A social model of identity formation applied by
the UK sociologist David Silverman2 can be shown to have utility in understanding how tensions arise and may
be dissipated at pediatric clinics in terms of adherence to treatment during adolescence. A consideration of the
broader social context at school for Black students by the educationalist David Gillborn3 can help refine research
questions concerning the effects of silent strokes in pupils with SCD and the purposes of such research.
Conclusions: Insights from social science can help inform clinical advice given to people living with SCD/
thalassaemia about life chances; can provide a different framework for thinking about issues of adherence to
biomedical treatment, and can help clarify both the nature and the purpose of biomedical research questions.
BS9-2: Disparities in Sickle Cell Disease Care: Disentangling the Roles of Race, Place, and Disease
State.
Carlton Haywood PhD, MA; Rakhi Naik MD; Mary Catherine Beach MD, MPH; Sophie Lanzkron MD, MHS
Background: Patients with sickle cell disease (SCD) often complain of long wait times when seeking care in the
emergency department (ED). Because patients with SCD in the US are much more likely to be African-Americans,
it can be difficult to separate the effects of disease vs. race on SCD patient wait times.
Objectives: To examine the association of African-American race and disease status on ED wait times.
Methods: We examined data from the National Hospital Ambulatory Medical Care Survey for the years 2003
through 2008. Our outcome variable was waiting time (in minutes) from ED arrival to being seen by a physician.
Our primary independent variable was disease status (SCD vs. long bone fracture [LBF] vs. all others). Analyses
were conducted for all patients, and for African-American patients only.
Results: An estimated 553,943,439 ED visits occurred over the study period, with LBF patients accounting for
1.1% (n = 5,929,085), and SCD patients accounting for 0.2% (n = 1,142,078) of those visits. Bivariate analyses
found that SCD patient wait times were 25 minutes longer than LBF patients, and 13 minutes longer than all
other patients (mean wait = 67 minutes vs. 42 minutes vs. 54 minutes, p < 0.0001). After adjustment for age, sex,
insurance, and race, SCD wait times remained 32% longer than LBF patients (p = 0.007). SCD wait times were
38% longer than LBF patients after additional adjustment for assigned triage level and presenting level of pain
(p = 0.001). Among African-Americans, SCD patients were still found to wait 51% longer than LBF patients after
adjustment for age, sex, insurance, assigned triage level, and presenting level of pain (p = 0.001).
Conclusion and implications for public health practice: Our findings suggest that both black race and disease
status contribute to longer wait times in the ED for SCD patients. In order to improve the quality of ED care
delivered to this patient population, interventions and policies must at minimum take the effects of both disease
and race into account.

BS9-3: Profiling the Social and Behavioral Adherence Pathway in Thalassemia.

Robert Yamashita PhD
Background: The thalassemia longitudinal cohort (TLC) study was launched in 2007. TLC enrolled 366 patients
(72% adult, 48% male) from the major North American clinical centers, and London.
Objectives: Connecting similar standardized health outcome from parental reports on pediatric patients and adult
patient self-reports builds a cross-sectional picture of the social and behavioral outcome. This is important for
designing appropriate social and behavioral interventions.
Methods: TLC deployed standardized social and behavioral research instruments, and collected data on chelation
use as part of its clinical instrumentation.
Results: These data show that the physical health summary scales (PHS) are poorer than US norms, but mental
health summaries (MHS) scores are close to US norms. The data also illustrate steep drops in PHS during
adolescence and sharper declines for adults while MHS scores improve after the 25-34 age group. PHS subscales
show a clear separation in general health (GH) assessments. Males are scored lower in parental assessments,
while the self-report adult scores appear higher. In pediatric parental assessments, drops in physical health scores
occur during adolescence. These contrast with high scores in very young adults. However, after that there are
steep drops in all scales. Over time, male and female scores appear to cross over at the 25-34 age group, before
separating back into higher male responses. MHS subscales show a 20 point separation in behavior or vitality
(B/VT) scores. Gender patterns are similar to PHS scores, except the older groups show improvement across
all scales. The older group outcomes reflect the survivors of poor adherence.
Conclusion and implications for public health practice: These data capture the known problem areas of
adolescence, and the point of early death in thalassemia due to non-adherence. With adolescence, bodily pain,
self-esteem, and social role scores drop before other measures, this could be indicative of other events such as a
drop in a sense of family cohesion. Adult scores show early drops in emotional role and self-esteem, while the rest
of the scales appear to have a more linear decline to the 25-34 age group. These health outcome indicators point to
possible sites and kinds of social and behavioral interventions for thalassemia patients.
BS9-4: Social Function and Risky Behaviours in Jamaican Adolescents with SCD.
Monika Asnani MBBS, DM; Komal Bhatt MBBS; Marvin E. Reid PhD; Novie Younger PhD
The adolescent period is the time when young people develop risky behaviours that will affect their health in the
future; such as smoking and tobacco use, unhealthy dietary habits, inappropriate sexual behaviours that place
them at high risk for illnesses such as HIV disease. The presence of a chronic illness further magnifies the many
physical, social and psychological challenges of puberty and other interpersonal development issues that affect
adolescents. Similarly, the many challenges that teens with sickle cell disease (SCD) face may lead them to engage
in risky behaviours in an effort to improve peer acceptance, a feeling of independence etc. The comprehensive
model of care that is employed at the Sickle Cell Unit in Jamaica is ideal to allow counseling and discussions to take
place with these young people. Despite this, understanding of the social functioning and risky behaviours of SCD
adolescents in Jamaica is limited as well as anecdotal and this study aims to reduce this gap.
We report on the results of a survey of 122 adolescents with SCD, and offer comparisons to a nationally
representative sample of adolescents. Our findings suggest that, despite better socioeconomic status of SCD
adolescents, they exhibited more problems of schooling, had higher depression scores and much lower physical
activity. Almost half of the sample claimed to have had sexual intercourse in the past but most were not sexually
active at present. Over 80% reported condom use at last sexual encounter. 28% had smoked cigarettes and 17.4%
had smoked ganja in the past, however a large proportion (78%) had used alcohol and this latter was significantly
greater than the national sample. We further discuss the implications of our findings.
BS10 Best Public Health Practices in Working with a Rare Disorder

BS10-1, BS10-2, and BS10-3: In this special session, panelists will describe their work on exemplary public
health approaches to overcome special challenges in working with a rare disorder such as
thalassemia. Three activities will be presented:
1. ICD code update: The panel will describe a recent achievement submitting a revised set of ICD codes for
thalassemia that was ultimately accepted by the Centers for Medicaid and Medicare Services for revision. Prior to
revision, one code was employed to identify a wide range of disorders collectively known as thalassemia, each of
which presents with a wide variation of clinical severity. The approval of this ICD code update will ultimately result
in a more accurate diagnosis for thalassemia patients and also enhance public health surveillance activities.
2. Social media campaign: Thalassemia is considered a rare disorder in the United States and one in which
patients frequently feel isolated; patients who are not treated at one of the major treatment centers are hard to
reach and may lack access to information and resources that impact negatively upon their outcomes. To help
overcome this obstacle and to locate more patients for inclusion in the CAF patient registry, the Cooley’s Anemia
Foundation recently launched a social media campaign utilizing Facebook and Twitter. Results, strategies and
lessons learned from this project will be presented.
3. Increasing understanding of adherence challenges: Formative research conducted in 2009 produced
a number of recommendations on ways to increase the flow of two-way communications regarding adherence
challenges, a major issue for this population which has profound impact upon outcomes. One recommendation was
to convene a series of town hall meetings in order to learn more from patients about their challenges in keeping
adherent to treatment. Learnings from these town halls will be presented.
Presentations:
BS10-1: Success in Revising ICD Codes for Thalassemia.
Jeanne Boudreaux MD
BS10-2: Strategies for Using Social Media to Reach People Who Have a Rare Disorder.
Craig Butler BFA, MA
BS10-3: Understanding Adherence to Treatment From the Patient’s Perspective.

Kathleen Durst LCSW
BS10-4: New Drug Approvals and the Role of Advocacy Organizations in Demonstrating Unmet Patient Need.
Gina M. Cioffi BA, JD

Background: On October 14, 2011 the Federal Food and Drug Administration issued approval to ApoPharma
for the use of Ferriprox, an oral iron chelator, for the treatment of iron overload in patients with thalassemia
major when deferoxamine therapy is contraindicated/inadequate. This was approved under the FDA’s accelerated
approval program, designed to provide patients with earlier access to promising new drugs followed by further
studies to confirm the drug’s clinical benefit. This program allows the FDA to approve a drug to treat a serious
disease based on clinical data showing that the drug has an effect on an endpoint that is reasonably likely to predict
a clinical benefit to patients, or on an effect on a clinical endpoint other than survival or irreversible morbidity
(illness). The approval of the drug in the U.S. lags approval in Europe by twelve years. Studies published during
this time indicated a reduction in deaths from cardiac failure. MRI technology advanced during this time presenting
a preferred end point from that on which the drug trial was initially designed. The Cooley’s Anemia Foundation
advocated to the FDA for a fair review of the drug’s merits and worked to persuade the company to file a New Drug
Application (NDA) with the FDA.
Objectives: To highlight the limited but important role that an advocacy organization can play in gaining new treatments.
Methods: On an ongoing basis we reviewed the literature on the drug. We met with the FDA staff on three
occasions, including in the meetings patients using the drug, as well as global experts to present current
information on benefits derived from the drug. We encouraged the drug company to move with the application to
the FDA and presented testimony before the Advisory Committee which demonstrated the need for this drug.
Results: The FDA approved the application on October 14, 2011.
Conclusions and implications for public health practice: It is imperative that patient advocacy groups,
especially those representing rare diseases, study the literature and work with the FDA and drug sponsors to
overcome obstacles that delay or threaten approval of a drug where benefit outweighs risk.
SS1 Sickle Cell Disease and Vaccines

SSS1-1: Pneumococcal Conjugate Vaccines and Sickle Cell Disease Deaths: Cause-of-Death Data From
Rio De Janeiro, Brazil.
Clarisse Lobo MD; Jane Hankins MD, MS; Scott Grosse PhD
Background: Newborn screening for sickle cell disease (SCD) helps reduce mortality, contingent on the
appropriate use of preventive measures. Penicillin is effective against sepsis, but adherence is often low. The
introduction of 7-valent pneumococcal conjugate vaccine (PCV7) in the US in 2000 was followed by >40%
reduction in SCD deaths among young children. In 2010 Brazil introduced universal immunization with the
10-valent pneumococcal conjugate vaccine (PCV10).
Objectives: This analysis assesses the frequency of sepsis as a cause of death prior to 3 years of age among
Brazilian children with SCD in conjunction with the frequencies of S. pneumoniae serotypes. Our goal is to project
the numbers of early SCD deaths preventable by PCV10 and PCV13 in Brazil.
Methods: Infants with SCD identified through newborn screening in Rio de Janeiro state from July 1, 2000 through
May 1, 2008 (n=688) were followed to identify deaths occurring during the first 36 months of life, classified by major
cause of death.
Results: A total of 35 children with SCD died before age 3 years, yielding a cumulative death rate of 5.1%. The
leading causes of death were sepsis (n=14, 40%), acute chest syndrome (n=11, 31%), and splenic sequestration
(n=7, 20%). None of the children with deaths due to sepsis had received the recommended schedule of three
doses of PCV7, which was available in just one location in the state through a special program. If PCV10 had been
universally administered during this period, it is projected that 11 of 14 (assuming 79.7% efficacy against serotypes
circulating in Brazil) deaths would have been avoided. The all-cause SCD cumulative mortality rate under age 3
would have been 31% lower, 3.5%. If children with SCD had received all 3 doses of PCV13, one additional death
would have been avoided.
Conclusion and implications for public health practice: The introduction of universal PCV10 in Brazil is
expected to result in approximately 30% fewer deaths among young children with SCD. The targeted offer of
PCV13 to young children with SCD in Rio de Janeiro state is expected to reduce deaths even further and may
prove cost-effective for this population.
SS1-2: Immunization Rates Among Michigan Children with Sickle Cell Disease Compared to Disease-
Free Controls.
Mary Kleyn MSc; Violanda Grigorescu MD, MSPH; Rachel Potter DVM, MS; Patricia Vranesich RN, BSN; Robin O'Neill MPH
Background: Since children with sickle cell disease (SCD) are at increased risk of acquiring invasive infections
compared to the general population, complete immunization coverage could reduce the number and burden of
these infections. Little is known about the immunization rates of children with SCD compared to the rates among
disease-free children.
Objectives: To determine how immunization rates among children with SCD compare to those of controls.
Methods: Children born from 2004-2008 in Michigan confirmed with SCD through newborn screening (NBS) were
included as cases. Disease-free controls were matched 3:1 with cases on birth month, birth year and race. Cases
and controls were linked to live birth records and then with the Michigan Care Improvement Registry (MCIR),
a statewide system for reporting immunizations. Characteristics were compared between cases and controls
using chi-square tests. The recommended immunization schedule through 18 months was used to determine the
appropriate number of vaccines and age of series completion. Conditional logistic regression was used to assess
the association between having SCD and series completion for each vaccine examined in unadjusted models and
controlling for confounding (birth weight and neonatal intensive care unit [NICU] admission).
Results: Immunization records were available for 262 children with SCD and 758 controls. Cases were significantly
more likely than controls to be low birth weight (13% compared to 8%) and admitted to the NICU (11.5%
compared to 7%). The pneumococcal vaccine series had the lowest completion rates (52% of cases and 48% of
controls), and the Hepatitis B series had the highest (92% of cases and controls). Cases and controls had similar
odds of series completion for all vaccines except for the Measles, Mumps, Rubella (MMR) and Diphtheria, Tetanus,
Pertussis (DTaP) vaccines. Children with SCD were 1.4 times more likely to have received MMR and DTaP
compared to their disease-free counterparts. After adjustment, the associations remained significant.

Conclusion and implications for public health practice: The immunization rates for children with SCD are
similar to those of controls, with significantly higher rates for the MMR and DTaP vaccines. Continued attention
should be directed towards improving immunization rates for children with SCD, particularly for vaccines that
reduce risk of infection or have low completion rates.
SS1-3: Characteristics Associated with Not Completing the Pneumococcal Vaccine Series Among
Children with Sickle Cell Disease.
Mary Kleyn MSc; Violanda Grigorescu MD, MSPH; Rachel Potter DVM, MS; Patricia Vranesich RN, BSN; Robin O'Neill MPH;
William Young PhD
Background: Children with sickle cell disease (SCD) are at increased risk of acquiring invasive infections. Timely
completion of the pneumococcal vaccine series (PVS) could reduce the number and burden of these invasive
infections.
Objectives: To determine what characteristics are associated with failure to complete the PVS among those with SCD.
Methods: Newborn screening (NBS) records for children born from 2004-2008 in Michigan with SCD were linked
with live birth certificate records. Through live births, NBS data were linked with the Michigan Care Improvement
Registry, a statewide web-based system where immunizations are reported. Age at time of vaccination was
calculated using birth and vaccine dates. Maternal and infant characteristics (gestational age, sex, neonatal
intensive care unit [NICU] admission, region of residence, maternal education and age) came from birth certificate
records. PVS completion was defined as receiving 4 vaccines by 16 months of age. Bivariate and multivariable
logistic regression models were constructed to assess characteristics associated with failure to complete the PVS.
Results: In total, 291 newborns were diagnosed with SCD. Immunization data were retrieved for 260 children
(89.3%). Overall, 81% of the study population completed the PVS, but only 45% completed the series by 16 months
of age. NICU admission was associated with increased odds of failing to complete the series in bivariate (OR=1.6,
95% CI 0.7, 3.7) and multivariable (OR=1.5, 95% CI 0.5, 4.1) models, but the association did not reach statistical
significance. No characteristics examined were significantly associated with failure to complete the PVS in crude or
adjusted analyses.
Conclusion and implications for public health practice: No associations were found between select
characteristics and decreased likelihood of vaccine receipt among children with SCD, possibly due to low
heterogeneity in the study population. The lack of associations could also be due to widespread educational efforts
geared toward informing children with SCD about the importance of vaccinations. Particular emphasis should be
placed on increasing timely immunizations among children with SCD since fewer than half completed the PVS
following the recommended time schedule. Linkages between NBS, live births, and immunization data provide up-
to-date information on immunization status that can be used to monitor specific high-risk populations.
SS2 Assessing and Facilitating the Use of Genetic Testing for Rare Blood Disorders
Abstract: Rare genetic disorders are typically diagnosed on the basis of clinical symptoms and biomarkers,
sometimes with the aid of family history. Although it is not necessary to perform molecular genetic testing to make
a diagnosis, genetic testing can be valuable for multiple reasons. First, it can be used to assess prognosis and to
guide clinical management with the goal of improving health outcomes for patients. Second, the knowledge of
a proband’s mutation can greatly facilitate the diagnosis of family members who may have the same condition,
thereby allowing for earlier, often presymptomatic management. Third, knowledge of an individual’s carrier status
(for recessive Mendelian or X-linked disorders) can be used together with partner testing to allow for the primary
prevention of a conception of a child with a severe genetic disorder. Despite the potential advantages of genetic
testing, only a minority of individuals in the US with rare blood disorders have been tested. Barriers to genetic
testing include high costs or limited access because of intellectual property restrictions, reluctance by many payers
to pay for genetic diagnosis to guide management in the absence of documented evidence of improved health
outcomes as a result of genetic testing, uncertain cost-effectiveness, and lack of patient and family awareness of
the uses of genetic information.
SS2-1: The Benefits of Genotyping Patients With Hemophilia in Order to Guide Management to
Reduce the Risk of Inhibitor Development.
Donna DiMichele MD
Dr. DiMichele will present what is known about the benefits of genotyping patients with hemophilia in order to
guide management to reduce the risk of inhibitor development.
SS2-2: Counseling Patients and Families Affected by Bleeding and Hemoglobin Disorders Regarding
Genetic Testing (Carrier Screening) of Family Members for Both Diagnosing Additional Cases
(Cascade Testing) and for Reproductive Planning.
Kristin Nunez MS, CGC
Ms. Nunez will discuss her clinical experience counseling patients and families affected by bleeding and hemoglobin
disorders regarding genetic testing (carrier screening) of family members for both diagnosing additional cases
(cascade testing) and for reproductive planning.
SS2-3: Major Barriers to Genetic Testing for Rare Blood Disorders and Potential Solutions to Overcome
These Barriers, Using the Case of Hereditary Hemorrhagic Telangectasia (HHT) as a Case Study.
Reed Pyeritz MD, PhD
Dr. Pyeritz will outline major barriers to genetic testing for rare blood disorders and discuss potential solutions to
overcome these barriers, using the case of hereditary hemorrhagic telangectasia (HHT) as a case study.
SS3 Pediatric Issues In Blood Disorders

Babies and children with blood disorders have special issues that if not appropriately managed can result in
significant morbidity and mortality. This session will focus on pediatric issues in three blood disorders.

SS3-1: Hemophilia.
Roshni Kulkarni MD
Background: Babies born with hemophilia face special challenges during their first year of life including proper
diagnosis and appropriate treatment for early complications. Chief among the serious complications that occur
in babies with hemophilia are intracranial hemorrhage, the development of an inhibitor (antibody) to treatment
products and the need for and complications of central venous access devices.
Objectives: To describe the occurrence of complications among babies with hemophilia in their first year of life.
Methods: Data collected on babies with hemophilia who have received care in federally funded hemophilia
treatment centers (HTC) in the U.S. as part of the Universal Data Collection (UDC) project will be used to describe
occurrence rates of bleeding complications during the first year of life. Data collected from HTC visits when the
baby was between 21 months and 30 months of age will be used. Risk factors for these complications will be
examined using bivariate and multivariate analyses.
Results: There are 488 babies with hemophilia that are eligible for study. Of those, 82% have hemophilia A and
18% have hemophilia B. Sixty percent have severe, 24% have moderate and 16% have mild hemophilia and the
distribution of race/ethnicity is similar to that of the U.S. general population. About 35% of the babies had no
family history of hemophilia and were diagnosed on the basis of a bleeding complication after birth. Among the 354
(72.5%) of babies with a bleed, the sites of the first bleed included the circumcision site (26%), head (14%), oral
cavity (8.8%), joints (5.6%) and other sites for the remainder.
Conclusion and implications for public health practice: This is an example of special issues for babies and
children with bleeding disorders. Other presentations will look at special issues for this population among those
with clotting disorders and hemoglobinopathies.
SS3-2: Sickle Cell Disease.

Michael DeBaun MD, MPH
Dr. DeBaun’s efforts regarding hematology have focused on understanding the etiology, pathogenesis and management
of cerebrovascular injury in children with sickle cell disease (SCD). He was among the first clinical investigators to
document carefully the epidemiology, cognitive and clinical significance of silent cerebral infarcts in children with
sickle cell anemia and to demonstrate that both size and location of cerebral infarcts result in specific cognitive loss in
children. Dr. DeBaun will discuss the findings of his research in this area and other pediatric issues in SCD.
SS3-3: Diamond Blackfan Anemia.

Jeffrey M. Lipton MD, PhD
Dr. Lipton began his investigations into the biology of this disorder in 1979 and has established the first registry
that is collecting data from patients throughout the U.S. to characterize this very rare but serious condition.
Dr. Lipton will describe what has been learned from the registry about the complications that affect babies and
children with this disorder.
SS4 Population-based Research on Venous Thromboembolism in Norway:

Implications for the United States
It is difficult to identify representative samples of Americans with incident deep vein thrombosis (DVT) or
pulmonary embolism (PE),which together comprise venous thromboembolis (VTE). Prospective cohort studies
which enroll a representative cross-section of the adult population in defined geographic areas and track them over
a period of decades are costly and logistically challenging. Furthermore, it is often challenging to access medical
records and other information for cohort members. In Norway, such studies are much more straightforward to
undertake. At least two major, population-based cohort studies of incident VTE are ongoing in Norway: the Health
Survey in North Trondelag (HUNT) conducted by NTNU, the Norwegian University of Science and Technology,
in Trondheim, and the Tromsø IV study conducted by the University of Tromsø. This session will present findings
from these two independent studies and in addition will include preliminary findings from a new analysis that pools
data on VTE cases from both studies with matched individual records on the receipt of disability pensions from the
national disability pension register maintained by Statistics Norway. This is the first-ever analysis of long-term work
disability outcomes following symptomatic DVT or PE in a large, representative population sample.
Presentations:
SS4-1: Associations Between Life-style, Cardiovascular Risk Factors and Risk of Venous Thrombosis -
Lessons Learned From the Tromsø Study.
John-Bjarne Hansen MD, PhD
Dr. Hansen will provide a synthesis of the main findings of the Tromsø IV study regarding risk factors, including
anthropometric measures (obesity, waist circumference, height), lifestyle risk factors such as smoking, and alcohol.
He will discuss the implications of these findings for US patient and provider education message development.
SS4-2: Register Data and Population-based Health Surveys as Sources for Research on VTE — Past
and Future Opportunities.
Finn Egil Skjeldestad MD, PhD
Dr. Skjeldestad will present an overview of two population-based cohort studies conducted in specific regions of
Norway which have analyzed the incidence and risk factors for VTE and the implications of the incidence findings
for US. He will also describe the opportunities for linking cohort and clinical data with population-based registers in
Norway using unique personal identification numbers.
SS4-3: The Association of Incident VTE with Subsequent Receipt of a Disability Pension.
Ekwutosi Okoroh MD, MPH
Dr. Okoroh will present the findings of a new analysis of data from the two Norwegian cohort studies linked to
individual-level information from Statistics Norway to examine the association of incident VTE with subsequent
receipt of a disability pension.

SS5 Blood Safety

SS5-1: Blood Safety Surveillance of Heavily-transfused Thalassemia Patients.

Ijeoma Azonobi MD
This presentation will review the history and current status of the thalassemia Blood Safety Program at the Division
of Blood Disorders at the CDC. It will include a discussion of activities related to HIV, Hepatitis A, B, and C, which
have traditionally monitored, as well emerging pathogens that impact this population, such as West Nile virus,
Trypanosoma cruzi (agent of Chagas disease) and Babesia species.
SS5-2: Continued Transmission of Parvovirus B19 in Plasma-Derived Factor Concentrates Despite

Plasma Minipool Screening.
J. Michael Soucie PhD; Christine De Staercke PhD; Meera Chitlur MD; Ralph Gruppo MD; Craig Hooper PhD; Craig Kessler MD;
Roshni Kulkarni MD; Marilyn Manco-Johnson MD; Paul Monahan MD; Meredith Oakley MPH; Jerry Powell MD; Meredith Pyle MS;
Michael Recht MD, PhD; Brenda Riske MS, MBA, MPA; Hernan Sabio MD; Sean Trimble MPH
Background: Parvovirus B19 (B19) is a small, non-enveloped virus that causes a typically benign flu-like illness
most commonly in childhood. Because B19 is resistant to viral inactivation, clotting factor manufacturers have used
B19 nucleic acid testing (NAT) since 2000 to screen plasma pools and withhold from fractionation those with B19
DNA exceeding an established threshold.
Objectives: Perform seroprevalence study in children 2–7 years old to assess impact of screening on B19 transmission.
Methods: Blood specimens from participants of the Universal Data Collection (UDC) project born after January 1,
2001 were tested for IgG antibodies to B19. Data collected on treatment products used by participants were used
to categorize lifetime exposure as 1) no products, 2) recombinant products only, 3) plasma-derived (P-D) products
only, or 4) both recombinant and P-D products. The proportions of participants with B19 IgG antibodies were
compared across age and product exposure categories to determine whether users of products were at higher risk
of past infection with B19 compared to those with no product use.
Results: A total of 1,643 specimens from 1,043 participants aged 2 – 7 years were tested. Compared to subjects
with no exposure to products, subjects in nearly every age group exposed to either P-D products alone or to both
P-D and recombinant products had a higher B19 antibody prevalence. In a logistic regression analysis controlling for
differences in the distribution of demographic and clinical characteristics, participants exposed to P-D products alone
were 1.7 times more likely to have B19 antibodies than those unexposed to blood or factor products (p = 0.002).
Conclusion and implications for public health practice: P-D factor products are important therapies for
people with VWD, hemophilia inhibitors and rarer factor deficiencies. These serologic data provide evidence
for continued transmission of B19 through these products after implementation of B19 NAT. Lowering the B19
threshold for plasma pool rejection should be considered. More importantly, effective viral inactivation processes
are needed to protect users of these products not only from infection with B19 but from other as yet unidentified
or emerging viruses that would not be detected by B19 NAT.
SS5-3: Rh Hemolytic Disease of the Newborn: A Major Public Health Problem.

Alvin Zipursky MD, FRCP; Vinod Paul MD, PhD
Background: Rh hemolytic disease of newborn infants is preventable by administration of anti Rh (D) gamma globulin
to Rh negative women post-partum; as a result Rh disease has been virtually eradicated from developed countries.
Objectives: To provide evidence that Rh isoimmunization and consequently Rh hemolytic disease of the newborn
occurs in low income countries.
Methods: :The evidence has been obtained by determining the annual total distribution of anti-Rh (D) gamma
globulin world-wide. That information combined with data on total births and prevalence of Rh negativity provides
indirect evidence of the total number of women who have received anti-Rh (D) gamma globulin and thereby the
number who have not received protection.
Results: Data have been obtained for India, Pakistan and Nigeria. In these countries, it is estimated that annually
over one million women did not receive anti-Rh gamma globulin and as a result over 100,000 babies in these
countries are born with Rh hemolytic disease resulting in stillbirths, neonatal deaths or bilirubin induced brain
damage (kernicterus). Direct evidence of the problem has been found in patients admitted to the All India
Institute of Medical Science in New Delhi. 51 of 2180 pregnant women had Rh Isoimmunization and babies with
Rh hemolytic disease. Of these, 30 required exchange transfusion and seven died. In many countries Rh negative
women are not identified. One approach to solving this problem has been in the state of Bihar, India where there is
now a program to determine Rh groups of 34 million girls, ages 0-18.
Conclusion and implications for public health practice: This serious public health problem is preventable
and programs should be developed for the prevention of Rh is immunization in all women at risk and thereby the
eradication of Rh hemolytic disease of newborn infants.
Posters: Day 1, Monday March 12, 2012
P-1: Antiphospholipid Syndrome in the Thrombosis Research and Prevention Network.

Thomas Ortel MD, PhD; Michele Beckman MPH; Claire Philipp MD; Stephan Moll MD; Marilyn Manco-Johnson MD; John Heit MD;
Paula Bockenstedt MD; Andra James MD
Background: The Thrombosis Research and Prevention Network currently includes five academic centers with
expertise in the management of patients with common as well as rare thrombotic disorders. Patients referred to
these centers are approached by the research staff to participate in a prospective registry, documenting patient
characteristics, laboratory data, and outcomes, as well as agree to be contacted concerning any new protocols
for which they might be eligible. Patients with antiphospholipid syndrome (APS) are frequently referred to
Thrombosis Centers for evaluation and recommendations.
Objectives: To characterize patients with APS and compare them to non-APS patients with venous and or arterial
thromboembolic disease referred to the Thrombosis Network.
Methods: A web-based data registry was implemented at the Thrombosis Network Centers in 2003. Information
collected includes demographics, referral patterns, medical history, and laboratory and radiographic data.

Results: Of 2983 unique patients enrolled through the first three years of the Registry, 285 (9.6%) were referred
for APS. Most were female (n=205; 72%) and Caucasian (n=234; 82%). Twenty-seven were pediatric (9.5%). The
primary referral sources for APS patients were Hematology/Oncology (n=68; 24%), Internal Medicine (n=40; 14%),
and Family Medicine (n=38; 13.3%). Clinical manifestations included venous thromboembolism (DVT: n=158;
55.4%; PE: n=82; 28.8%), arterial thromboembolism (stroke: n=50; 17.5%), and adverse pregnancy outcomes
(n=47 of 205; 23%). Sixty-six patients (30%) had a concurrent autoimmune disorder. Fifty-one women (25%) were
referred for pre-pregnancy counseling or pregnancy management. Venous thromboembolism in unusual locations
was not uncommon (intraabdominal: n=11 (3.9%); cerebral sinus: n=9 (3.2%); inferior vena cava: n=8; (2.8%);
intraocular: n=8; (2.8%)). A positive family history was reported by 52 patients, with thrombosis (n=29; 56%)
and stroke (n=13; 25%) being the most common manifestations reported in family members. Most patients were
subsequently followed through the Thrombosis Center (n=214; 75%).
Conclusion and implications for public health practice: Patients with APS are frequently referred to
specialized Thrombosis Centers for evaluation and management of their disease. Almost 10% are pediatric, and a
family history of thrombosis is frequently present. Patients with more aggressive prothrombotic phenotypes are
frequently referred to these unique Centers with broad expertise in the management of their disorder.
P-2: Baseline Evaluation of the Blood Brotherhood Program.

Michelle Burg BBA; Lauren Neybert LGSW; Gretchen Simmons MPH, MCHES; Kimberly Haugstad MBA
Background: Research indicates that direct communication between individuals who have similar diseases can
significantly improve the quality of life for chronically ill people (Medical News Today, January 3, 2007). Therefore,
HFA created the Blood Brotherhood program to provide peer-networking opportunities and educational services,
both in-person and online, to improve the health of older men with bleeding disorders.
Objectives: To examine the impact of social support, educational and networking programs on the overall quality
of life of aging adult men with hemophilia.
Methods: A baseline survey among adult men, 25 and older, with hemophilia assessed current level and knowledge
of physical activity, perceived emotional/social support, knowledge of specific health related issues, and overall quality of life.
Results: The survey participants (N=172) ranged in age from 27 to 82, with an average age of 43 years. Almost half
of respondents (43%) reported some degree of social isolation. Nearly four in ten respondents (39.5%) reported
that, in the last month, they seldom or never talked to anyone other than their doctors and family members about
their condition. Another 34.9% stated that they talked to others about their condition only sometimes during the
last month. Yet, the majority of respondents (80.2%) reported that it is “very” or “extremely” helpful to be able to
talk about issues related to their condition with other men with bleeding disorders. In the last year, participation
in both face-to-face and online peer support forums continues to grow. About 250 members have participated in
nearly 75 face to face events and 283 members have contributed to over 400 discussion topics and over 6,000 posts
of peer to peer communication via the private online forum.
Conclusion and implications for public health practice: Analysis of baseline data collected to date indicates
that participating in peer networking (face-to-face and online) opportunities that support adult male peer
relationships is desirable and needed for aging adult men with bleeding disorders. Follow-up data is currently being
collected; results will be available in October 2011.
P-3: Burden of Illness: Direct and Indirect Costs Among Persons with Hemophilia A.
Kathleen Johnson PharmD, MPH, PhD; Zheng-Yi Zho MS; Marion Koerper MD; Brenda Riske MS, MBA, MPA; Judith Baker MHSA;
Megan Ullman MPH; Randall Curtis MBA; Jiat Poon; Mimi Lou MS
Background: Hemophilia is a costly disorder not only for its high medical expenses, but also for the high indirect
costs incurred.
Objectives: To examine the direct and indirect costs of hemophilia care among children and adults with
hemophilia A in the US.
Methods: Observational data were obtained from HUGS-Va, a multicenter study examining six federally supported
Hemophilia Treatment Centers (HTCs) providing care in seven states. Eligible individuals were aged 2-64 years,
had factor VIII level ≤30%, and received 90% of their hemophilia care at a HTC. Participants (or parents of children
<18 years) completed a standardized initial questionnaire including socio-demographics, clinical characteristics,
health status, and treatment patterns. Data from one-year healthcare utilization records (HTC, outpatient and
emergency room (ER) visits, laboratory tests, hospitalizations) and two-year clotting factor dispensing records
measured direct medical costs. Participants were followed regularly for two years via telephone or internet
surveys to obtain information on work or school absenteeism, time spent arranging hemophilia care, and unpaid
hemophilia-related support from caregivers. Indirect costs were imputed using the human capital approach, which
uses wages as a proxy measure of work time output. All costs were annualized and converted to 2010 US dollars.
Results: Between July 2005 and July 2007, 329 participants were enrolled: 222 with complete data were
included in the analysis. Two-thirds had severe hemophilia. The average age was 9 years for children and 33
years for adults. Annual average direct medical costs, respectively, for children and adults without inhibitors
were $151,096(median:$95,955) and $217,643(median:$148,762). Annual average indirect cost of hemophilia for
parents was $7,756(median:$313, range:$0-71,342) and $12,721(median:$0, range:$0-67,527) for adults. The total
average annual costs (direct and indirect costs) for persons with mild, moderate and severe hemophilia and with
inhibitors, respectively, were $59,102(median:$7,462), $84,208(median:$61,439), $262,656(median:$203,242)
and $940,360(median:$551,382) (P<0.0001). Costs for clotting factor accounted for 54%, 74%, 90%, and 95%
respectively of the total costs.
Conclusion and implications for public health practice: Hemophilia involves high direct and indirect costs.
Lost wages from underemployment or unemployment attributable to hemophilia are the major drivers of indirect
costs. Measuring burden of illness accurately will further the development of strategies aimed at improving the
quality of patient care while decreasing overall costs.
P-4: Development and Implementation of a Transition Timeline for Pediatric Patients with Sickle
Cell Disease.
Melina Cheong RN(EC), MN; Geradline Cullen-Dean RN, MN; Navreet Gill RN, MN
Background: The life expectancy of patients diagnosed with sickle cell disease (SCD) has drastically increased
over the last decade due to newborn screening, improved management and patient education. This phenomenon
has led to an unprecedented number of patients with SCD entering the adult health care system, thus necessitating
pediatric health clinics to develop and implement resources to facilitate the transition of patients with SCD from
pediatric to adult health care. The transition timeline is a written resource which meets this need. Therefore,
based on an increasing need for transition resources for pediatric patients with SCD and previous success with the
timeline resource, a SCD specific timeline was developed and implemented.

Purpose: Change is a continuous process that children and families go through over time as development
ensues. An early start to developing skills through a child’s time within the health care system is imperative to
the transition process. By developing and implementing a transition timeline, a written resource describing a
developmentally appropriate continuum towards increased self-management for pediatric patients with sickle cell
disease at SickKids was established.
Methods: 1. Development – an existing timeline template was modified to include content specific to SCD,
based on the shared management model. The shared management model is a model that incorporates the
patient or family member to take responsibility for particular aspects of their care. Modifications were finalized
in collaboration with the SCD health care team and the Good 2 Go program; an inter-professional team offering
transition-related education, support and resources to clinical programs. 2. Implementation – Dissemination of
the timeline was guided by Good 2 Go timeline implementation guidelines, and collaboration with the SCD nurse
practitioner, clinic nurses and clinic physician. Development of the timeline was explained to parents and patients
at clinic visits. Families were encouraged to read through the timeline together and complete the online survey. All
answers were kept anonymous. Younger families were encouraged to keep the timeline for future reference as their
children grew older and moved through the different domains outlined.
Outcomes: The SCD timeline was developed over six months and included parental and adolescent focused
strategies for increased patient self-management within five domains entitled: medical, education, self-care, social
and general. Timeline implementation began June 2011 with 70 SCD timelines distributed in the hematology clinic
during the first three weeks. Timelines were distributed to patients and families during regularly scheduled clinic
appointments by a nurse or physician who briefly discussed the timeline’s purpose and usefulness with patients
and families. Age was not a limiting factor as families with younger (i.e., newborn) and older children (up to 18
years old) were given a timeline. Overall, patients and families expressed positive opinions about the timeline and
indicated that they would refer to it in the future. Staff within the SCD health care team (i.e., nurse practitioner,
clinic nurses, and physician) was enthusiastic about implementing the timeline and incorporating the timeline in
both their practice during patient appointments. Uptake of the timeline into clinical practice was facilitated by the
Good 2 Go team and their expertise in transition and previous experience with development and implementation of timelines.
Conclusions/Implications: Nurse –led implementation of this transition resource is expected to improve patient
self-management skills, and thereby facilitate the transition of adolescent patients with SCD into adult health care.
Online evaluation of the perceived helpfulness of the timeline is currently underway.
P-5: Educational Opportunities for Hemoglobinopathies.

Geetha Puthenveetil MD; Deborah Green BS; Melissa Belvedere BSN; Mary Brown; Diane Nugent MD
Background: Sickle cell disease (SCD), sickle cell trait (SCT) and other hemoglobinopathies are currently
diagnosed on newborn screening (NBS) in California; however the follow up on affected SCT individuals is
suboptimal (11%). Public awareness of the prevalence of hemoglobinopathy genes in various ethnic subpopulations
is low and this negatively impacts health outcomes in affected individuals in these communities.
Objectives: Increase awareness of sickle cell disease and trait in ethnic subpopulations in Southern California.
Methods: Utilizing CA state counseling protocols, parents of children with a hemoglobin trait were provided
counseling by telephone or in person at the SCD Foundation of California (SCDFC). Additionally free hemoglobin
trait testing was offered to parents. The following topics were reviewed during counseling: function of hemoglobin,
meaning of SCT and SCD and the differences between them, incidence and inheritance of SCD/SCT, management
of medical problems in SCD/SCT, availability of prenatal testing.
Results: Twelve parents were counseled from 09/2010 to 9/2011 - 80% African-American, 10% Hispanic and
10% from other ethnic groups. Phone counseling was provided to 5 individuals, and face to face interviews were
conducted with 7 individuals. 100% of individuals counseled reported satisfaction with the counseling session and
were referred back to their pediatrician for follow-up. Approximately 25% of the SCD patients currently treated
at CHOC are Hispanic and 90% of the parents were unaware of the prevalence of SCD in their community; this
sentiment was echoed by their health care providers.
Conclusion and implications for public health practice: Although SCT is diagnosed on NBS, the appropriate
referral to health care providers for education and treatment is often disregarded by both the families as well
physicians, secondary to ignorance of genetic disorders in the various ethnic minorities. We seek to raise awareness
of hemoglobinopathies in the health care providers in the ethnically diverse Orange County region by providing
education at local hospitals and in the local community through didactic and interactive teaching sessions. We
also seek to provide culturally appropriate genetic counseling to affected individuals and thus collectively improve
public awareness of these disorders. Involvement of community based organizations such as SCDFC in this effort
will help to solidify our efforts at the grass-roots level.
P-6: Emergency Department Nurse Perception of Narcotic Use in Sickle Cell Vaso-Occlusive Crisis.
D'Etta Jenkins, RN, BC, DNP, MSM, CMC
Background: Over 72,000 African Americans in the United States have sickle cell disease (SCD). Episodes of
severe pain, known as VOC, are the most common cause of ED visits and hospital admissions for patients with
(SCD) (Platt & Sacerdote, 2006).
Objectives: The objective of this project was to test the effect of an intervention on VOC management in an
ED. The first aim was to evaluate nurse’s knowledge of APS guidelines for adult VOC patients in the ED pre-post
implementation of the VOC intervention. The second aim was to evaluate nurse’s awareness of pain management
pre-post implementation of the VOC education.
Methods: Informed consents were obtained from a convenience sample of 62 males and female ED nurses who
treat VOC patients. Both registered nurses and licensed practical nurses were included. English speaking and
comprehending nurses were included. Length of employment and experience of participants varied. The study
was Internal Review Board approved. A thirty minute power point presentation was developed and conducted for
ED nurses to increase awareness of VOC and usage of APS guidelines. Case studies were discussed. Simulated
VOC was demonstrated. Round table discussions were used to explore treatment options as well as for debriefing.
Intervention effectiveness was assessed by gathering pre and post data from ED nurses using the Nurse Perception
of Vaso-Occlusive Crisis in the Emergency Department self-administered survey.
Results: The overall mean values of subscale variables for pre-intervention nurses showed a trend (P=0.014)
toward less compatible (8.98 ± 5.52; mean ± one standard deviation) than post- intervention (6.89 ± 3.58);
complexity (P=<.0001), pre- (12.76 ± 5.9) and post- (8.29 ±4.29); relative advantage (P=<.0001), pre- (12.58 ±
4.95) and post- (8.94 ± 4.61); commitment (P=0.01), pre- (1.95 ± 1.15) and post- (1.48 ± 0.8). In this sample, less
was better indicating increased awareness of VOC and APS guidelines when compared to the pre test means.

Conclusion and implications for public health practice: An educational intervention had significant impact
on ED nurse perception of narcotic use in the VOC and awareness and usage of APS guidelines. Nurses should be
aware of the VOC and implement APS guidelines for SCD to treat the patients more effectively and efficiently.
P-7: Emergency Department Visits by People with Hemophilia: Rates and Reasons 2000-2009.
Azfar-E-Alam Siddiqi MD, PhD; Michele Beckman BA, MPH; Hussain Yusuf MD, MPH; Rodney J. Presley PhD; Christopher Parker PhD, MPH
Background: Emergency department (ED) plays an important role in management of people with hemophilia.
Published reports of reasons for ED have been from single centers, with no reports from large data sets. Shifts in
distribution of common reasons over time have also not been explored.
Objectives: To describe the common reasons for ED visits by people with hemophilia.
Methods: We analyzed the ED data of National Hospital Ambulatory Medical Care Survey (NHAMCS), for years
2000-2009, identifying male hemophilia cases from diagnostic ICD-9 codes. Rates of ED visits per 100,000 male
population of the United States (U.S.) were computed. The patients’ stated reasons for visits were grouped into
four categories: Bleeding, injuries, joint problems and ‘other’. Comparisons of the frequencies of these complaint
categories between the first and the latter half of the decade were made.
Results: During the period 2000-2009, an average 15820 ED visits/year occurred that had an ICD-9 code for
hemophilia recorded in one of the three diagnosis fields. This amounts to 10.9 visits/100,000 population. Stratified
by age, the rates were 16, 15, 17, 11 and 5/100,000 for ages <10, 10-19, 20-29, 30-39 and ≥40 years, respectively.
By race, the rates were 3, 13 and 41/100,000 for white, black and other races, respectively. Forty-three percent
of visits had only one stated reason; 35% had two and 22% had three. 15.8% of presenting complaints were joint-
related, 15.9% were injuries, 27.6% were bleeding related and 40.7% were ‘other’. Distribution of the reasons for
visits in the first half of decade differed from the second half. The largest difference was observed in joint problems
(24.9%-first, 4.1%-second) and ‘other problems’ (28.6%-first, 56.5%-second). Smaller differences were seen for
bleeding (29.6% vs. 24.8%) and injuries (16.9% vs. 14.6%).
Conclusion and implications for public health practice: Given the rarity of the disease, ED visits by people
with hemophilia constitute only a small proportion of total estimated ED visits (10.91 vs. 36,800 per 100,000
per year). The reasons were mostly associated with their hemophilia; however, probably due to improvements
in management during the past decade, visits for joint related problems went down substantially, with a
corresponding increase in the proportion of non hemophilia-related events.
P-8: Health Literacy in Persons with Hemophilia B.

Jiat-Ling Poon BSc; Mimi Lou MS; Zheng-Yi Zhou MS; Megan Ullman MPH; Marion Koerper MD; Roshni Kulkarni MD; Kathy Parish
PhD; Kathleen Johnson PharmD
Background: Optimal hemophilia management may depend on health literacy (HL) since it requires an
understanding of the condition, including basic medical instructions and information, to treat or prevent
bleeding episodes. To our knowledge, HL and its impact have not been previously assessed in the hemophilia B
(HB) population.
Objectives: Describe the health literacy of persons with hemophilia B or parent(s) in the United States enrolled in
the Hemophilia Utilization Group Study (HUGS-Vb).
Methods: HUGS-Vb is a prospective cohort study designed to collect information on healthcare utilization
and burden of illness in HB patients from nine Hemophilia Treatment Centers (HTCs) in eight geographically
diverse states. Patients and/or their parent(s) (for participants <18) completed an initial survey which included
sociodemographics, clinical characteristics, including hemophilia severity and patient-reported outcomes. HL was
assessed using the validated Short Test of Functional Health Literacy in Adults (English/Spanish), which sample
respondents’ ability to comprehend and interpret basic medical instructions, yielding [1]numeracy (range:0–8) and
[2]reading comprehension (RC, range:0-36) scores. Respondents have either inadequate (score:0-16), marginal
(score:17-22) or adequate (score:23-36) functional HL, based on RC scores. Numeracy is scored as percent correct
answers.
Results: Of the 95 enrolled participants, 86 (43 children <18 (41 parents, 2 self); 43 adults) had complete HL
information and are included for analysis. Of these, 40 (46.5%) had severe HB, 21 (24.4%) are on prophylaxis.
Sixty-two (72.1%) respondents had ≥12 years of education. On the numeracy test, 3 (3.5%) respondents scored
4 (50% score) or 5 (62.5% score) and 83 (96.5%) scored ≥6 (75-100% score). Mean RC score was 34.2±3.4
(median:35, range:8–36); 85 respondents had adequate functional HL, one had inadequate functional HL. No
significant differences in HL were found between participants/parents of patients with differing hemophilic
severities, household income, education levels, or between the prophylaxis and on-demand treatment groups.
Conclusion and implications for public health practice: Participants with HB or their parent(s) receiving
hemophilia care in HTCs appear to have adequate functional HL, allowing them to understand and interpret basic
medical instructions. Future research should assess changes in HL from diagnosis to after patients receive regular
care and to evaluate the impact of HL on outcomes in both HTC and non-HTC populations.
P-9: Healthcare Utilization, Characteristics and Costs for Thalassemia As Principal Diagnosis for
Hospitalization in the United States.
Suchitra Sundaram MBBS; Ruchika Goel MD, MPH; Lakshmanan Krishnamurti MD
Background: Thalassemia is one of the most common genetic diseases worldwide. In the past, because of
premature mortality this was a disease primarily of childhood. Advances in treatment have improved outcomes
and survival of patients. However, there are limited data on the healthcare utilization and public health impact of
Thalassemia in the United States.
Objectives: To determine the healthcare utilization of Thalassemia in the United States.
Methods: We analyzed the National Inpatient Sample (NIS) database, sponsored by Agency for Health Care
Quality and Research, a stratified probability sample of 20% of all hospital discharges among U.S. community
hospitals (n=1,044, sampling universe = 90% of all such discharges)for the year 2007. Sampling weights were
applied to represent all community hospital discharges in the US. 282.49. We determined health care utilization for
Thalassemia (ICD-9-CM code: 282.49) as primary discharge diagnosis. These data are limited by the fact that there
is a single ICD-9-CM code for all forms of Thalassemia.
Results: Of the 39.5 million discharges there were 754 with Thalassemia as principal diagnosis of whom 376
received a transfusion during the hospitalization. Age distribution was: 18-44 years (34.75%), 45-64 years (13.42%),
>65 years (13.16%). There were too few discharges in the 1-17 year age group to be reported (value less than 10).
Males represented 41% of the discharges. The mean lengths of stay for the above age groups were 3.6, 3.7, 2.1 and
4.1 days respectively. Most of the hospital discharges had insurance coverage. Medicare and Medicaid were the

primary payers for 24.44 and 34.07% respectively. Residents from low median income zip codes represented 30% of
the discharges. Most of the patients were admitted to hospitals that are private-non-profit (66%), teaching (68%),
located in metropolitan areas (97%), and in the southern region (43%). There were too few deaths in hospital to be
reported (value less than 10). The average hospitalization charges were USD 23,519 .The aggregate national charge
was USD 17.6 billion with USD 10.2 billion in charges shared by Medicare and Medicaid.
Conclusion and implications for public health practice: Thalassemia is a disease with significant public
health impact and cost to the public exchequer. Majority of hospitalizations occur in young adults.
P-10: Integration of a Pediatric Psychology Program in a Hemophilia Treatment Center.

Buranahirun PsyD; Sharon H. O'Neil PhD; Kathleen Ingman PhD
Background: Children with hemophilia experience greater difficulties with emotional well-being, including
symptoms of depression and low self-esteem (Trzepacz, Vannatta, Davies, Stehbens, & Noll, 2003). The
comprehensive care model employed by hemophilia treatment centers (HTCs) emphasizes preventive services,
psychosocial support, and identification of resources. Specific mental health care needs are typically addressed
by referral to mental health providers who are not part of the HTC. Referral to outside providers may be difficult
for patients and families to accept, with data from primary care settings suggesting that 40% of children identified
never receive behavioral services (Rushton, Bruckman, Kelleher, 2002). Mental health services that are integrated
into the HTC may be more acceptable to families, decrease stigma associated with mental health services, as well
as increase access to and utilization of mental health care.
Objectives: To examine the impact of a psychology/ neuropsychology program embedded within a hemophilia
treatment center on identification of psychosocial needs, access to care, and utilization of psychological/
neuropsychological services.
Methods: A postdoctoral psychology/ neuropsychology fellow joined the comprehensive care team at a
pediatric hospital and participated as part of the care team in outpatient medical clinic visits by providing brief
consultation, and follow-up psychological evaluations and psychotherapy. Data regarding patient utilization of
psychological services were collected July 2010 – July 2011 and compared to data from the year prior to program
implementation.
Results: Fifty-three patients were referred for psychological/neuropsychological services July 2010-July
2011, as compared to 3 patients during the previous year when no consultant was present. Psychological/
neuropsychological evaluation referrals were equally distributed across referral sources. Common reasons for
referral included school problems, behavior problems, anxiety, and depression. Forty-six percent of psychotherapy
patients were self-referred after meeting with the psychologist consultant in clinic. Patient follow-up and utilization
of services were 60% and 75% for psychological evaluation and psychotherapy referrals, respectively.
Conclusion and implications for public health practice: Integration of psychology in the HTC increased
awareness about triggers for psychological services and increased patient access to psychological services. The rate
of patient and family follow-up support the idea that services are more easily accepted when patients are familiar
with the setting and clinician.
P-11: Intra-Abdominal Venous Thrombosis: Characteristics of Pediatric and Adult Patients.

Daniel Landi MD; Michele Beckman MPH; Nirmish Shah MD; Paula Bockenstedt MD; John Heit MD; Roshni Kulkarni MD; Marilyn
Manco-Johnson MD; Stephan Moll MD; Claire Philipp MD; Judith Andersen MD; Thomas Ortel MD, PhD
Background: The incidence of venous thromboembolism (VTE) in children is increasing, as more children
are living with serious illness. Clinical characteristics associated with abdominal vein thrombosis overlap with
characteristics associated with deep vein thrombosis (DVT) in the legs and pulmonary embolism (PE) but also
possess unique attributes.
Objectives: Characterizing venous thromboembolism (VTE) in pediatric patients is an important step toward
developing management guidelines and prophylaxis regimens in high-risk groups.
Methods: Demographic and baseline characteristics were prospectively collected from consecutive consenting
patients enrolled within one of seven Thrombosis and Hemostasis Centers from August 2003 to June 2010. Patients
with intra-abdominal venous thrombosis were divided into pediatric and adult groups and compared to patients in
the same age ranges with lower extremity DVT and/or PE.
Results: Forty-two children and 228 adults with abdominal VTE were enrolled. Pediatric patients were more likely
to have IVC thrombus (22 of 42; 52%) than adults (38 of 228; 17%; p<0.0001); conversely, pediatric patients were
less likely to have hepatic, portal, and mesenteric thrombosis (n=25; 60%) than adults (n=195; 86%, p<.0001).
While proportionately more adult women had abdominal VTE, comparable numbers of female pediatric patients
had abdominal thrombosis (20 of 42; 47.6%) and DVT/PE (68 of 136; 50%). The mean age for patients having
abdominal thrombosis was lower than patients having DVT/PE for both adults (38.3 vs 43.0 yrs; p<0.0001) and
pediatric patients (9.0 vs 11.9 yrs; p=0.014). Similarly, the mean body mass index was lower for patients having
abdominal thrombosis than patients having DVT/PE for both adults (28.1 vs 30.8; p<0.0001) and pediatric patients
(21.5 vs. 24.7; p=0.05). There were no relationships with race, ethnicity, or inherited thrombophilic disorders.
Sixty-one adult (26.8%) and 6 pediatric patients (14.3%) had another VTE elsewhere, with most occurring after
the initial event (21 DVT and 7 PE).
Conclusion and implications for public health practice: Children and adults with abdominal thrombosis
display different clinical characteristics when compared to those with DVT/PE, specifically in terms of gender,
location of thrombosis, and associated co-morbidities. Those working with pediatric patients should consider DVT/
PE, abdominal VTE, and be cognizant of the high risk for disease recurrence.
P-12: National Survey of State Medical Assistance Programs: Variations in Eligibility, Coverage and
Hemophilia Care Standards.
Robina Ingram-Rich BSN, MS, MPH; Judith Baker MHSA
Background: Medicaid, Title V, the State Children’s Insurance Programs (SCHIP) and other state medical
assistance programs provide access to health care for citizens who are low-income children, poor or receiving Social
Security due to disability. Each state and territory sets different income thresholds and diagnoses necessary to
qualify for assistance. Hemophilia is a bleeding disorder with high physical, social, and economic costs. Care through
one of 130 federally supported Hemophilia Treatment Centers [HTCs] reduces hemophilia morbidity and mortality.
HTCs report varying rates of Medicaid and SCHIP enrollment in their patient populations. Seventy HTCs utilize the

Public Health Service 340B pharmacy program to decrease cost of clotting factor and to generate income to sustain
HTC capacity. Some state medical assistance programs allow or prefer factor purchase from 340B programs.
Objectives: Variations among state medical assistance programs' coverage for HTC services have not been
systematically examined. The purpose of this study is to examine state and regional variations in medical
assistance programs and policies. Specific areas of interest include enrollment qualifications, insurance coverage,
ability to purchase factor from 340B programs and HTC care standards.
Methods: A telephone survey and review of online information posted by the state and territorial medical
assistance programs will obtain current data on 1) income level necessary to qualify, 2) coverage limitations for
clinic visits and factor purchase; 3) existence of state HTC standards.
Results: Survey results will provide descriptive data on the state-by-state differences in access to medical
assistance programs and the varying levels of support for hemophilia care by these programs.
Conclusion and implications for public health practice: This survey can be a platform for studies on the
impact of disparities in 1) income quailifications for medical assistance, 2) benefit coverage for HTC care and 3)
state HTC standards. The results provide stakeholders data to advocate for policies that promote equity within
regions and in the nation.
P-13: Network Approaches to Enhancing Services for Sickle Cell Disease and Trait Education and
Counseling Programs.
Lenee Simon MPH
Background: The Health Resources and Services Administration Sickle Cell Disease Newborn Screening Program
Follow-up Networks (Follow-up Networks) foster collaborative relationships between the public health system,
community-based organizations and primary and specialty care services providers. The expanded program scope in
2011 addresses emerging populations and uses life course theory as a framework for interventions that impact the
social determinants of health for sickle cell disease. Quality improvement and learning collaborative models are also
key components of the Sickle Cell Disease Newborn Screening Program.
Objectives: 1) Describe six approaches to creating networks for sickle cell disease and trait clinical and social
services; 2) Explain similarities and differences in network approaches and what may account for differences; 3)
Describe quality improvement themes shared by Follow-up Networks.
Methods: Qualitative review of six awarded proposals submitted to the Health Resources and Services
Administration and summary results from quality improvement activities to be conducted November 2011.
Results: Preliminary information on Follow-up Networks’ quality improvement strategies to improve outcomes and
quality of life for program participants affected by SCD (expected November 2011) will be outlined.
Conclusion and implications for public health practice: Understanding approaches that integrate public
health and health services delivery are essential to community-based sickle cell disease and trait health services
programs. The Follow-up Networks’ projects will contribute to the knowledge base about public health and
health services integration.
P-14: Outcomes Following Ankle Arthrodesis In Hemophilia: Analyses Using the Universal Data
Collection Surveillance Project.
Heidi Lane PT, DPT, PCS; Azfar-E-Alam Siddiqi MD, PhD; Robina Ingram-Rich BSN, MS, MPH; Patricia Tobase PT, DPT, OCS; R.Scott
Ward PT, PhD
Background: Hemarthrosis-bleeding into a joint- is one of the most common clinical manifestations of hemophilia,
with the ankle commonly affected. Ankle arthrodesis is used to treat severe hemophilic arthropathy of the ankle
to relieve pain. Individuals are often hesitant to proceed with the procedure due to concerns of loss of functioning.
Prior reports of ankle arthrodesis are limited to single center experience with reporting of outcomes related to
surgical success, infection rate, pain reduction, and bleeding recurrence.
Objectives: To report post ankle arthrodesis outcomes available in the Universal Data Collection (UDC): range of
motion, self-reported overall activity level and number of days missed from school/work.
Methods: Sixty-eight participants with hemophilia and first report of ankle arthrodesis were identified from UDC
data 1998-2010. The UDC is a CDC-funded study at 130 hemophilia treatment centers. Descriptive statistics were
calculated using data collected from the study visit pre-arthrodesis and the second study visit (two years) post
report of arthrodesis.
Results: The 68 subjects included had a mean age of 36.9 (SD 12.9) years; 85.3% were white, 11.8% black and
8.8% Hispanic. Fifty-eight (85.3%) had hemophilia A and 10 (14.7%) hemophilia B, with 49 (72.0%) severe and
the rest moderate or mild. Thirty-eight procedures involved the left ankle and 30, the right. Following arthrodesis,
overall mean arc of motion loss was 17.02° (SD=21.8; p=<.01), with mean dorsiflexion loss 3.9° (SD=10.1; p=<.01)
and mean plantarflexion loss 13.1° (SD=19.5; p=<.01). For patient reported activity level, 8 (11.8%) improved, 6
(8.8%) worsened, and the rest had no change. Mean missed days from school/work per year pre-arthrodesis 2.7
(SD=6.4) and post-arthrodesis 1.5 (SD=6.4), p>0.05.
Conclusion and implications for public health practice: Data collected through the UDC did not show loss
of functioning post-arthrodesis. As expected, ankle arthrodesis resulted in a significant loss of ROM in overall arc
of motion, dorsiflexion and plantarflexion. A major limitation of this study is the lack of assessment of changes in
pain, given that pain is the primary indication for the procedure. However, despite loss of range of motion post-
arthrodesis, most individuals reported maintenance of or improved activity levels.
P-15: Redefining School Curricula to Manage Blood Disorders.

Pushkar Aggarwal 2nd, Lt, (CAP)
Background: Middle and high school students, especially the African-Americans and those having Malaria
impacted regions as their descent have limited awareness and knowledge of Sickle Cell Trait (SCT) complications
and other hemoglobinopathies. Sickle Cell trait is found in 8% of African-Americans.
Objectives: There is no comprehensive program across the country to make school students aware of SCT. The
students are not aware that the sickle cell trait can lead to health complications if they are doing
strenuous exercise or swimming to build stamina or to compete. The students volunteering in Civil Air Patrol,
an United States Air Force Auxiliary, who do air sorties in unpressurised planes are unaware of sudden death
risk due to hypoexemia.
Methods: Incorporating the education material in biology, science and physical education text books and
lectures has been proposed as a viable solution. As the student progresses through various grades so does the

chapter advances each year with enhanced education material. It ties up with evolution, natural selection, vector
diseases, geographical distribution, blood composition, advanced biology and environmental science. Chapters
in mathematics, probability and computer science adopt simulations for natural selection based upon recessive
and dominant genes as in Sickle Cell. Geographical Information Systems depict the geographical distribution
and immigration of people. Social science students learn about historical perspectives and social implications
of marriage between two persons having similar genetic traits. Before any pain management techniques or
medications are adopted, the students should be made aware of the problem and the clinical symptoms.
Results: The severity of occurrences and complications of blood disorders can be diminished in the cohort who
have prior knowledge of the scientific reasoning of SCT. On the other side the students would be more interested in
scientific fields in the ailments which are of concern to themselves as well as the community.
Conclusion and implications for public health practice: A comprehensive education strategy to create
awareness and enhance knowledge especially in context with SCT and other hemoglobinopathies amongst school
students is proposed in this concept paper.
P-16: Sickle Cell Anemia Mortality Trends in Georgia, 1994-2008.

Thomas Adamkiewicz MD; Yvonne Fry Johnson MD, MSCR; Kitty Carter Wicker MD; Abdullah Kutlar MD
Background: Effective preventative and treatment modalities for sickle cell anemia (SCA) include stroke
prevention with transfusion in children found to be at risk by transcranial Doppler screening, and hydroxyurea
therapy for adults. Both of these interventions were introduced in 1998. In 2000, 7-valent pneumococcal conjugate
vaccination was licensed for all children <5 years old, resulting in a significant decline in pneumococcal infections
in children with SCA.
Objective: The current study examined the impact of these interventions on overall mortality from
SCA in Georgia.
Method: Number of individuals that died from SCA (primary cause) was retrieved from the Georgia Department of
Public Health Online Analytical Statistical Information System (Oasis) by age group, gender, county and year. Rates
were calculated using years of observation of the general Black or African American population. Data was grouped
into two periods (94-00 and 01-08).
Results: Of the 456 individuals that died from SCA from 1994 to 2008, 454 (99.9%) were Black or African
American. A significant decrease in mortality from SCA was noted in individuals below the age of 30 year. Urban
counties Relative Risk (RR) was 0.5 (95% Confidence interval [CI] 0.3, 0.7) p<0.001; rural counties RR =0.5 (95%
CI 0.3, 1.1) p=0.105. Overall population mortality rates from SCA did not change for those >=30 years over time:
RR in urban and rural counties was, respectively, 1.0 (95% CI 0.7, 1.2) p=0.810 and 1.0 (95% CI 0.6, 1.6) p=0.970.
Mortality was slightly but not significantly higher in rural counties RR=1.2 (95% CI 0.9,1.5) p=0.124; males tended
to have a higher mortality than females, RR 1.2(95% CI 1.0,1.4) p=0.050.
Conclusion and implications for public health practice: A significant decrease in mortality from SCA was noted
in children and young adults from 1994 to 2008 but not in older patients. Denominator data using actual number of
patients may help clarify if this lack of decline in mortality in older individuals is the result of overall greater number of
patients with SCA surviving to an older age, or that new therapies have a lesser impact in older patients.
P-17: Sickle Cell Trait and Clinical Complications: Assessment of the Scientific Literature.
Colleen Clark BA; Allyce Caines MA; Olubukola Ayeni BS; Dana Bryant MPH; Vence Bonham JD
Background: Since 1995, the sudden deaths of at least fifteen college athletes with sickle cell trait (SCT) have
been reported. In April 2010, the NCAA implemented a mandatory SCT screening policy for all Division I athletes.
This is the largest targeted carrier screening program in the United States within the past 30 years. Despite the
magnitude of this program, there is limited reported data on the quality of the existing scientific evidence on SCT
and its association with adverse clinical outcomes.
Objectives: To abstract articles for a systematic literature review of the clinical complications associated with
sickle cell trait and to assess the quality of this evidence; to evaluate the current findings in the following areas
relating to athletics: exercise, rhabdomyolysis, cardiovascular health, sudden death, mortality, and altitude.
Methods: A comprehensive electronic database search was conducted of published peer-reviewed research
articles between January 1, 1970 and December 31, 2010 that explored possible associations between SCT and any
condition with clinical significance. The included articles were reviewed using a standard abstraction form by two
primary reviewers. The abstraction form collected information on the study design, target population, recruitment,
genotyping, measures of outcomes, statistical analysis methods, and other methodologies. Each reviewer rated the
quality of the article as poor, fair, or good.
Results: For the topics of exercise, rhabdomyolysis, cardiovascular health, sudden death, mortality, and altitude,
103 articles were abstracted and of these, 62 were excluded and 27 were included with 14 articles not reviewed
(foreign languages). Of the included articles, 7 articles were rated as poor, 8 as fair, and 12 as good. For these
ratings the inter-rater reliability between abstractors is 91.8%. We will present data on how many studies had valid
measurements of genotypes, outcomes, appropriate control groups, and controlled for confounders and modifiers.
Conclusion and implications for public health practice: There are few good research studies addressing
the potential clinical complications of sickle cell trait that are associated with exercise complications. Numerous
scientific questions remain unanswered regarding SCT and the underlying environmental, genomic and
pathophysiologic mechanisms influencing complications. This review provides additional data to inform the
development of public health sickle cell carrier screening policies.
P-18: Stop the Clot®:What Every Healthcare Professional Should Know Online Curriculum
Development, Content, and Evaluation.
Mary Ellen McCann RN, MA; Sara E. Critchley RN, MS; Catherine B. Tencza MS; Diane Wirth ANP; Laura Earl RN, BSN, CACP; Kathleen
McCool PharmD, BCPS, CACP; Skye Peltier; Elizabeth Varga MS, CGC; Mary Lou Damiano RN, Med; Brenda Riske MS, MBA, MPA; Alan
Brownstein MPH
Background: Delivery of care to patients with thrombosis and thrombophilia (T/T) is highly variable or sub-
optimal. There is a need to increase awareness and knowledge in healthcare professionals (HCPs) about
prevention, risk, and treatment of T/T. Stop the Clot®: What Every Healthcare Professional Should Know was
developed by National Blood Clot Alliance (NBCA) as part of a cooperative agreement with Centers for Disease
Control and Prevention (CDC) to answer this need.
Objectives: To address knowledge gaps in HCPs caring for people with T/T. The long term goal is to
increase HCP knowledge of T/T patient management to lead to improved health outcomes and prevention
of secondary complications.
Methods: A needs assessment was sent by e-mail in March 2008 to 704 staff in Anticoagulation Clinics (ACCs) and

Hemophilia Treatment Centers (HTCs) to ascertain learning needs. A Curriculum Development Team (CDT) was
recruited from subject matter experts in ACCs and HTCs that included nurses, nurse practitioners, pharmacists,
and physician assistants, its intended target audience. A systematic approach determined selection of its target
audience, because these non-physician HCPs are more likely to encounter the patient at the entry point of
care. Lessons include Basics of Clotting, Basics of Thrombophilia, Anticoagulant Medications, Post-Thrombotic
Syndrome, Pulmonary Hypertension, and Prevention of Venous Thromboembolism. Content was developed in a
collaborative and reiterative process with an instructional design consultant. Objectives, content, graphics, videos,
review tests, and post-tests were outlined in a story board. An online format was chosen for extended outreach,
easy and instant access, and opportunity for self-paced learning. Continuing education credits were secured
through CDC.
Results: Results from NBCA web site metrics, the CDC standard continuing education evaluation, and a 3 month
follow-up questionnaire are benchmarks to evaluate this online course.
Conclusion and implications for public health practice: NA
P-19: Strategies for the Development of Outreach Campaigns Targeted towards the South Asian
Community on Thalassemia.
Gargi Pahuja MPH, JD; Robert Yamashita PhD
Background: In the United States (US), thalassemia is a disease of migration, affects minority populations who
came to the US for a variety of different reasons. In California about 10% of the population is made up of people
from Asian countries. Recent migrants have come for economic reasons. Many are unaware of their risk for
thalassemia. Language barriers and differing cultural and religious beliefs insulate the communities and make the
population difficult to engage. This presents challenges for community outreach efforts from clinics that need to
address multiple-cultures (not simply the patient-provider differences) using limited personnel.
Objectives: This paper focuses on developing community engagement and provide the South Asian (SA)
community with information about prevention of thalassemia as well as ways to seek assistance for diagnosis and
treatment concerns related to thalassemia to test strategies that can be used with other ethnic communities.
Methods: The SA community appears as insulated, large urban clusters, consisting of recent migrants who meet
the US need for a highly skilled technical workforce. They tend to be well-educated professionals, belong to local
religious institutions, and their older children are enrolled in universities which have SA student groups that are
actively involved on campus and in the local community. This is a prospective exploration of how to develop active
partnerships with the SA community.
Results: The SA demographics suggest that you have to start from the standpoint of equity – where engagement
is not simply telling them they have a problem but sharing information and helping the community develop its
own educational framing. It is imperative that wihen information about thalassemia is provided that information is
included about where the community can go for follow-up and appropriate local clinical care. Partnerships require
mutual trust, and educators need to adapt to the target community’s needs, schedule and agenda, and not an
expectation that will accept yours.
Conclusion and implications for public health practice: Building relationships is about long-term
commitment, not short-term reward. Working with a community requires continued presence, regardless of short-
term costs. Presence builds trust, and frames how the organizations can work together. Demonstrated success with
the SA community can provide a pathway for working with other at-risk Asian communities.
P-20: The Family Legacy: An Innovative Approach to Raising Awareness of Sickle Cell Disease and
Testing.
Iyamide Thomas, BSc
Background:In 2001, the United Kingdom set up a National Health Service (NHS) Sickle Cell and Thalassaemia
Screening Programme (NHSSCTSP) as the worlds’ first linked programme of antenatal and newborn screening
for sickle cell disease (SCD) and thalassaemia. Research showed that amongst the African and Caribbean priority
population SCD awareness was low, there was little knowledge of its inheritance and lots of misunderstanding
about the condition. To promote understanding and awareness of SCD and thalassaemia and the value of screening
so that people could make informed choices during pregnancy and before conception, the NHSSCTSP established
3 community outreach projects. In 2009, the Sickle Cell Society (SCS) was commissioned to deliver the ‘Family
Legacy’ project.
Objectives: Raise awareness of SCD and testing, Challenge stigma and misunderstanding, Explain about SCD,
Explain basic screening choice.
Methods: A 24-minute British Nigerian DVD drama called the ‘Family Legacy’ was produced and this entertaining
popular film format of ‘Nollywood’ is being used to educate priority populations on SCD, testing and associated
beliefs. Sessions (film screening and discussion) are delivered in a dissemination strategy that includes family
homes, churches, restaurants, hospitals, colleges, community organisations, broadcast media and barber shops
to particularly target men. A ‘trailer’ including the website (www.familylegacy.org.uk) plays on radio, TV and
promotional TV screens at GP practices, and colleges. We also aim to screen the film on West African and
Caribbean bound airlines. Independent consultants conducted a first evaluation by analyzing participant feedback
forms, interviewing outreach workers and some participants.
Results: The project has had significant positive effect on increasing knowledge and raising awareness of SCD.
Participants were very positive about the value of the sessions in raising awareness and 78% said they had learned
something new.
Conclusion and implications for public health practice: The project demonstrates substantial information
need amongst priority populations, showing that proactive outreach is an effective way to engage audiences outside
normal NHS channels. It is contributing to the NHSSCTSP core objectives of supporting informed choice, engaging
men, developing materials for the public and hearing their views. The evaluators recommended that NHSSCTSP
continue to invest in outreach work and fully integrate it into its overall communications strategy.
P-21: Using Multiple Data Sets to Build a Surveillance System for Hemoglobinopathies: Early
Lessons from Georgia.
Angela Snyder; Sharon Quary; James Eckman MD; Peter Lane MD; Robert Gibson MD; Jackie George; Janeth Spurlin; Beverly
Sinclair; Mei Zhou; Holly Avey; Jane Branscomb; Lillian Haley
Background: Georgia ranks among the top states in terms of sickle cell disease prevalence. While the total number
of individuals with hemoglobinopathies in Georgia is unknown, projections estimate that between 4,981 and 8,427
individuals are living with these disorders today. Since February 2010, a collaborative of Georgia stakeholders
including the Department of Public Health (DPH), the Sickle Cell Disease Foundation of Atlanta (SCDFA), Grady
Health System (Grady), Children’s HealthCare of Atlanta (CHOA), Georgia Health Sciences University (GHSU),
and the Georgia Health Policy Center (GHPC) have been working on the Registry and Surveillance System for
Hemoglobinopathies (RuSH) project through a cooperative agreement with CDC and NIH.

Objectives: The objectives of the Georgia RuSH project are to determine the annual incidence and 5-year
prevalence (2004-2008) of hemoglobinopathies (Sickle Cell Disease and Thalassemia) in Georgia and to describe
the demographics of the populations living with these disorders.
Methods: To estimate the incidence and prevalence of hemoglobinopathies in Georgia, potential cases are
identified from five sources: (1) the state newborn screening program (NBS); (2) the Georgia hospital discharge
file, which includes most in-patient and emergency room visits in the state; (3) the Grady, CHOA and GHSU health
systems, including all outpatient visits; (4) the State Medicaid and CHIP programs; and (5) the State Health Benefit
Plan (SHBP). Laboratory screening and confirmatory results, coupled with clinical expertise, are used to confirm
cases from NBS, Grady and GHSU data. ICD-9 and CPT codes are used to identify probable and possible cases from
additional administrative datasets. Individual datasets are examined to produce preliminary geographic estimates
of prevalence and to judge the potential overlap of cases prior to merging all datasets into one surveillance system.
Results: From 2004 through 2008, 926 newborns screened positive for a hemoglobin disorder in Georgia. During
that same time period, CHOA treated approximately 2,500 pediatric patients with a hemoglobin disorder, and
Grady and GHSU treated approximately 1,600 and 1,450 patients, respectively. Medicaid and CHIP programs paid
claims for approximately 8,800 enrollees with a hemoglobinopathy-associated medical encounter, while the SHBP
covered such services for 1,250 enrollees. Lastly, close to 10,000 individuals were treated in a Georgia emergency
room or hospital for a hemoglobinopathy. We estimate that up to 47 percent of the 10,000 individuals identified
through state hospital discharge data may also be present in one of the three hospital systems’ data. As well,
55 percent of the Medicaid/CHIP patients and 32 percent of the SHBP patients likely overlap with the hospital
discharge file. Close to 90 percent of the newborns identified through NBS are estimated to be followed by one of
the three hospital systems. Using newborn screening data from 1999 through 2009, we identified 10 counties with
the most incident cases. In addition to five metro Atlanta counties (Fulton, DeKalb, Cobb, Gwinnett and Clayton),
Chatham, Bibb, Henry, Muscogee and Richmond Counties are found to have high incidence rates.
Conclusion and implications for public health policy or practice: Early outcomes from the Georgia RuSH
project have allowed us to identify areas of the state to focus hemoglobinopathy outreach efforts. Further progress
will allow us to answer programmatic, policy and outreach questions specific to Georgia, and aid the development
of educational materials for providers, policy-makers and legislators. Lessons learned can be shared with other
states interested in developing hemoglobinopathy surveillance systems.
P-22: Using Web 2.0 for Health Education and Health Promotion for Patients with Bleeding
Disorders.
Aimée Williams MPH, CHES, CPH; Cathliyn Buranahirun PsyD; Guy Young MD
Background: Hospitals and other health organizations have typically used the traditional model of communication
(i.e., vertical, top-down communication only) for health education and health promotion. New research suggests
that organizations use Web 2.0 as a channel for health promotion and health education. This model includes
vertical, bottom-up, and horizontal communication, enabling participants to actively engage and guide the content
of the exchange. This has the potential to improve health outcomes by disseminating health information and
providing social support to patients and caregivers (Gibbons et al., 2011). One Hemophilia Treatment Center
(HTC) has used Web 2.0, specifically Facebook, but there is no research to indicate if patients with bleeding
disorders are interested in engaging with their HTC via Facebook.
Objectives: Determine the potential use of and interaction with an HTC Facebook page by patients with bleeding
disorders and their caregivers. Identify the type of information and engagement that patients with bleeding
disorders and their caregivers want with an HTC Facebook page.
Methods: A needs assessment (provided in English and Spanish) was mailed to HTC patients age 13 and older and
caregivers of patients age 13-17. Data regarding patient/caregiver Facebook use, potential interaction with an HTC
Facebook page, and the type of information and interaction desired was collected.
Results: Data was collected from 29 patients and 18 caregivers. Patients indicated that they are likely to “like” the
HTC Facebook page, but are undecided about interacting with the page through posts and comments. Caregivers
are undecided about “liking” the Facebook page, but support their child/children age 13-17 “liking” the Facebook
page. Patients indicated preferences for new stories, research, and hospital-sponsored events. Caregivers wanted
information regarding scholarship information, news stories, personal stories, and research.
Conclusion and implications for public health practice: The type of information desired by respondents
supports the multidirectional model of communication for Web 2.0 and the research that patients and caregivers
want Web 2.0, specifically Facebook, as a channel for health education and health promotion. Patients and
caregivers want vertical communication, updates on news stories and research. Caregivers also want horizontal
communication, such as personal stories.
P-23: VTE-Associated Hospitalizations Among U.S. Children, 2000-2006.

Sheree Boulet DrPH; Scott Grosse PhD; Craig Hooper PhD
Background: To date, two studies have documented a recent increase in pediatric VTE in the U.S., while a
separate study showed no temporal trends during 1979-2001.
Objectives: To evaluate trends in hospitalizations for pediatric VTE in a nationally representative sample of U.S.
children 0-17 years of age during 2000-2006.
Methods: The data were derived from the 2000, 2003, and 2006 Kids’ Inpatient Databases. Hospitalizations for
children 0-17 years of age were included for each year; routine newborn care was excluded. Discharges with
VTE were identified by ICD-9-CM codes (325, 671.3x, 671.4x, 671.5x, 671.9x, 451.11, 451.19, 451.2, 451.81,
451.83, 451.84, 452, 572.1, 453.0—453.3, 453.40—453.42, 453.8, 453.9, 673.2x, 673.8x, 415.11, and 415.19) and
characteristics of pediatric VTE discharges in 2006 were compared with discharges without VTE during the same
year. Charges were converted to 2006 dollars using the consumer price index for hospital services. Trends in VTE-
associated discharges from 2000-2006 were evaluated using variance-weighted least squares regression.
Results: There were an estimated 7,331 pediatric discharges associated with VTE in 2006. Compared with children
discharged without VTE, those with VTE were older, had longer average lengths of stay, and higher mortality
rates during 2006. The rate of VTE-associated pediatric discharges increased 49% from 2000 through 2006, with
concomitant increases in mean hospital charges ($109,652 in 2000 vs $129,402 in 2006). Although the VTE-
associated discharge rate was highest in children 12-17 years of age, the largest increase in mean charges (19%)
was noted among children 1 to 5 years of age.
Conclusion and implications for public health practice: VTE- associated pediatric discharges increased from
2000 through 2006 with corresponding increases in inpatient care utilization and hospital charges. These findings
can be used to inform program planning, resource allocation, and the evaluation of systems of care for children
with VTE. Additional research is needed to further describe trends in co-occurring conditions and patterns of care
for children with VTE.

Day 2, Tuesday March 13, 2012

8:30 AM – 10:00 AM Plenary II: Public Health Approaches To Increasing
The Recognition Of Rare Blood Disorders
Panelists in this session will analyze how the optimal design and function of disease registries or surveillance
systems can vary with the epidemiological and clinical characteristics of specific diseases and the questions the
data collection system is intended to address; clarify the roles and contributions of patient support groups in the
development of data collection systems for rare disorders; identify innovative approaches to increase physician
awareness and referral for diagnosis of blood disorders; and, learn how multi-center rare disease consortia are
expected to advance the state of clinical knowledge and awareness of multiple rare diseases.
Presentations:
Registries and Data Collection Systems for Rare Blood Disorders. Jeffrey Lipton MD, PhD
Registries and Surveillance Systems with Examples for Rare Bleeding Disorders. Amy Shapiro MD
Challenges in Increasing the Detection of Under-recognized Disorders. Marie Faughnan MD
Overview of the NIH Rare Disease Consortia. Rashmi Gopal-Srivastava PhD

Deep Vein Thrombosis and Pulmonary Embolism
BS11-1: Stop the Clot®: What Every Healthcare Professional Should Know Online Curriculum
Development, Content, and Evaluation.
Mary Ellen McCann RN, MA; Catherine B. Tencza MS; Laura Earl RN, BSN, CACP; Diane Wirth ANP; Sara E. Critchley RN, MS; Alan
Brownstein MPH
Background: Delivery of care to patients with thrombosis and thrombophilia (T/T) is highly variable or sub-
optimal. There is a need to increase awareness and knowledge in healthcare professionals (HCPs) about
prevention, risk, and treatment of T/T. Stop the Clot® What Every Healthcare Professional Should Know was
developed by National Blood Clot Alliance (NBCA) as part of a cooperative agreement with Centers for Disease
Control and Prevention (CDC) to answer this need.
Objectives: To address knowledge gaps in HCPs caring for people with T/T. The long term goal is to increase HCP
knowledge of T/T patient management to lead to improved health outcomes and prevention of secondary complications.
Methods: A needs assessment was sent by e-mail in March 2008 to 704 staff in Anticoagulation Clinics (ACCs) and
Hemophilia Treatment Centers (HTCs) to ascertain learning needs. A Curriculum Development Team (CDT) was
recruited from subject matter experts in ACCs and HTCs that included nurses, nurse practitioners, pharmacists,
and physician assistants, its intended target audience. A systematic approach determined selection of its target
audience, because these non-physician HCPs are more likely to encounter the patient at the entry point of care.
Lessons include Basics of Clotting, asics of Thrombophilia, Anticoagulant Medications, Post-Thrombotic Syndrome,
Pulmonary Hypertension, and Prevention of Venous Thromboembolism. Content was developed in a collaborative
and reiterative process with an instructional design consultant. Objectives, content, graphics, videos, review tests,
and post-tests were outlined in a story board. An online format was chosen for extended outreach, easy and instant
access, and opportunity for self-paced learning. Continuing education credits was secured through CDC.
Results: Results from NBCA web site metrics, the CDC standard continuing education evaluation, and a 3 month
follow-up questionnaire are benchmarks to evaluate this online course.
BS11-2: Use of Online Media to Promote Public Awareness of Blood Clots & Clotting Disorders.
Richard Quattrocchi BA; Mary Ellen McCann RN, MA; Judi Kaplan Elkin MEd; Alan Brownstein MPH
Background: The National Blood Clot Alliance (NBCA), as part of a cooperative agreement with Centers for
Disease Control and Prevention (CDC), revised its website to provide greater access to online resources for
people seeking information on diagnosis, prevention and treatment of blood clots. The site has become NBCA’s key
communication tool for thrombosis & thrombophilia (T/T).
Objectives: 1. Website to serve as T/T information portal for patients and healthcare providers (HCPs). 2.
Improve/expand educational content for patients and HCPs. 3. Achieve appeal in design and interactivity to a larger
audience and ensure visitors get the information they seek.
Methods: NBCA conduced an on line usability study to gain user feedback on navigation and search features. The
usability study included recorded videos of users navigating the site and recording their impressions in response
to a list of specific tasks to perform related to finding T/T educational content. Changes in the site design were
implemented based on the user feedback. The website received a face-lift with new branding and drop down menus
for easy navigation and rich media content including short subject videos and webinar recordings.
Results: The result was 30% traffic growth within 90 days of implementing changes. Site traffic data patterns
suggest that key to site success includes navigation ease, relevant content and SEO.
Conclusion and implications for public health practice: Site users report that information sought, including
testing, treatment, HCP referrals and patient stories met their needs. Usage and growth patterns indicate the
online approach to education for T/T is cost effective and useful for patients and HCPs. Continued expansion of
content and site visits are likely to lead to positive public health outcomes.
BS11-3: Webinar “Clinical Pearls” Series: Development, Content, and Evaluation.

Mary Ellen McCann RN, MA; Laura Earl RN, BSN, CACP; Kathryn Hassell MD; Diane Wirth ANP; Catherine B. Tenzca MS, Brenda Riske
MS, MBA, MPA; Kathleen McCool PharmD, BCPS, CACP; Mary Lou Damiano RN, Med; Skye Peltier PA-C, MPH; Alan Brownstein MPH
Background: There is a need to increase awareness and knowledge in healthcare professionals (HCPs) about
prevention, risk, and treatment of thrombosis and thrombophilia (T/T) as well as to share strategies to create
a therapeutic alliance with patients to promote adherence. This series of ongoing webinars was developed by
National Blood Clot Alliance (NBCA) as part of a cooperative agreement with Centers for Disease Control and
Prevention (CDC) to answer this need.

Objectives: Discuss selected topics on T/T risk, prevention and treatment. Apply strategies to enhance
communication skills in healthcare professionals to influence patient adherence.
Methods: A Curriculum Development Team (CDT) was recruited from subject matter experts in ACCs and HTCs
that included nurses, nurse practitioners, pharmacists, and physician assistants, the intended target audience of
webinars. This team became cohesive during development of a comprehensive online curriculum. The team derived
webinar topics from a needs assessment sent electronically to healthcare professionals (HCPs) in Anticoagulation
Clinics and Hemophilia Thrombosis Centers in May 2008. A systematic approach determined selection of the
target audience, because these non-physician HCPs are more likely to encounter the patient at the entry point
of care. Through applying an effective and easy-to-understand “5A” framework for catalyzing patient behavior
change, healthcare professionals will learn to counsel a patient through the challenges of living with blood clots or
clotting disorders. The 5A actions include assess, advise, agree, assist, and arrange. Content was developed in a
collaborative and reiterative process with an instructional design consultant. Objectives, content, and graphic were
presented in Power Point, and the team members presented the webinars or recruited other experts. Challenges
included unpredictable attendance and some electronic glitches. Each webinar was presented live twice and
archived on the National Blood Clot Alliance web site.
Results: Results from a follow-up questionnaire post-webinars show a positive response to these webinars.
Conclusion and implications for public health practice: NA
BS11-4: Creation and Use of Stop the Clot Forum Toolkit for Patient Education Programs.
Judi Kaplan Elkin MEd; Mary Ellen McCann RN, MA; Alan Brownstein MPH
Background: Early efforts for National Blood Clot Alliance (NBCA) in hosting Stop The Clot® Forums (STCF)
reached approximately 1000 patients from 10 STCFs over 2 year span. Limited resources impacted NBCA’s ability
to reach and educate more patients. As part of a cooperative agreement with CDC, NBCA developed a do-it-
yourself guide(Toolkit) for volunteers to use to execute Stop The Clot® branded patient seminars in major US
markets, to increase ability to expand its’ secondary prevention reach to prevent complications in patients with
blood clots or clotting disorders.
Objectives: Create STCF Toolkit enabling volunteers to organize local STCFs with minimal NBCA staff support,
yielding increased numbers of Forums with same resources. Standardize “core” content on blood clots and clotting
disorders. Facilitate implementation of STCFs to expand program reach to provide patients with information they
need to know about blood clots and clotting disorders to make better health decisions.
Methods: Initial draft of STCF Toolkit was created in 2010 in tandem with two STCFs conducted for NBCA. This
enabled NBCA to test the Toolkit’s content and online registration components. Alterations were made as a result
of testing. Through initial marketing efforts, final drafts of the Toolkit were sent to volunteers with expressed
interest in STCFs. The Toolkit was also shared with attendees at professional conferences. As a result, additional
changes were made to improve ease of STCF implementation and set realistic expectations for volunteers.
Results: While in creation, the first draft of the Toolkit was utilized by two sites. Positive evaluations were
obtained from attendees attesting to the value of the Forums in expanding their knowledge. Initial marketing
efforts yielded positive comments about content and comprehensiveness of Toolkit as well as some concerns about
certain expectations. The final STFC Toolkit is posted to NBCA website. Marketing efforts will focus on email
blasts, Facebook and outreach to hospital networks and anticoagulation clinics.
Conclusion and implications for public health practice: STCF attendee evaluations indicate that content of
STCFs successfully addresses educational objectives. With Toolkit, NBCA seeks to fulfill objective of expanding the
reach of educational messages by facilitating more STCFs.
BS11-5: Gaps in Hospital VTE Prophylaxis Demonstrate Need for Technology to Promote Patient
Safety in Hospitals.
Alan Brownstein MPH; Greg Maynard MD, MSc, SFHM; Richard Friedman MD, FRCSC; Elizabeth Varga MS; Lisa Fullam; Jack Ansell MD
Background: Venous thromboembolism(VTE) is hospital acquired in 70% of all cases, and is the most common
preventable cause of hospital death. Improved awareness and use of evidence-based VTE prophylaxis in hospitals
can prevent morbidity/mortality. The National Blood Clot Alliance (NBCA) conducted a survey to document the
importance of gaps in practice of evidence-based prophylaxis reported among three patient groups at increased
risk for VTE.
Objectives: Demonstrate the need for expanded use of technologies that would promote improved VTE
prophylaxis and patient safety in hospitals through physician awareness.
Methods: A survey was conducted among three at-risk patient populations to measure VTE prophylaxis
experiences reported. These patients, screened from online research panels, were representative of target at-risk
patient groups, including: 500 patients hospitalized >3 days, mean age 52.5 (64% female), 500 patients diagnosed
with cancer, mean age 57.8 (64% female) (41% required hospitalization for treatment), and 250 patients who had
undergone a partial and/or full hip/knee replacement(THA/TKA), mean age 53.6 (55% female). Criteria for patient
group selection had to have been met within 12 months of survey.
Results: When surveyed, all patient groups reported suboptimal prophylaxis experiences: The use of blood
thinning pills was reported by 28% of patients hospitalized for >3 days, 21% of cancer patients, and 58% of
THA/TKA patients. Similarly, the use of blood thinners injected under the skin was reported by 29% of patients
hospitalized for >3 days, 16% of cancer patients, and 46% of THA/TKA patients. The use of compression hose and
mechanical compression devices among the at-risk patients surveyed was: patients hospitalized for >3 days 39%
compression hose, 37% compression devices, cancer patients 35% compression hose, 31% compression devices,
and THA/TKA patients compression hose 74%, compression devices 57%. Aspirin use was reported by 42% of THA/
TKA patients, 37% of patients hospitalized for >3 days, and 28% of oncology patients.
Conclusion and implications for public health practice: The application of existing evidence-based guidelines
for DVT/PE prophylaxis was suboptimal among all at-risk patient populations surveyed. Expanded use of
technologies (e.g. EMR integrated with patient order-sets) to improve physician education and increase adherence
could improve patient safety, reducing VTE morbidity/mortality.

BS12 Adherence To Prophylaxis/Treatment In Blood Disorders

BS12-1: Evaluation of Adherence to Hemophilia Treatment As Measured Using the VERITAS

Adherence Scales.
Natalie Duncan MPH
Adherence to prophylaxis or treatment is a cross-cutting issue across all blood disorders. Many patients find it
difficult to sustain adherence to prescribed medications or devices, and those who are non-adherent to regimens
may be at risk for poor health outcomes. To improve adherence, more research and information dissemination
is needed in the following areas: 1) measuring adherence, 2) understanding the environmental barriers and
facilitators to adherence, and 3) understanding the behavioral and sociological aspects of adherence. The following
special session is proposed:
The accurate assessment of adherence is a key issue in achieving successful patient outcomes. Ms. Duncan will
discuss adherence to prophylaxis in hemophilia, the development and evaluation of adherence measures, and the
potential impact of HTCs in promoting adherence. Ms. Duncan will present information from the Indiana HTC
collected using the validated VERITAS-Pro scale of adherence demonstrating how prophylaxis adherence varies by
demographic factors and insurance status.
Part I: Why Does Adherence Matter? — Will Describe the Issue of Adherence in Hemophilia and How
HTCs Can Help by Measuring It
Part II: The VERITAS Adherence Scales — Will Describe IHTC’s Use of the VERITAS Scales.
Abstract 1:
Evaluation of Adherence to Prophylactic Hemophilia Treatment As Measured Using the
VERITAS-PRN Adherence Scale.
Natalie Duncan, MPH
Background: Episodic treatment of bleeding disorders is defined as utilization of clotting factor concentrates
in response to acute bleeding episodes to achieve hemostasis. Non-adherence to prescribed episodic regimens
can limit treatment effectiveness and result in target joint formation, pain and disability. Evaluation of and
interventions to promote adherence may improve health outcomes.. The VERITAS-PRN treatment adherence
scale was validated and published in 2010.1 This scale recognizes treatment adherence as a multi-faceted behavior
and thus measures treatment adherence using six four-item subscales (Treat, Time, Dose, Plan, Remember,
Communicate). The scale takes approximately 10 minutes to complete and is currently validated in English only.
Objectives: The objective of this study is to describe the treatment adherence patterns of patients utilizing
episodic regimens to treat hemophilia.
Methods: The VERITAS-PRN is administered during comprehensive clinic appointments of all patients who utilize
episodic treatment for hemophilia. Scores are entered into a customized form in the IHTC electronic medical
record. Mean scores and standard deviations are reported. Mean scores are evaluated against cutoff scores, defined
as scores greater than one standard deviation above the mean, to determine the proportion of patients scoring
higher than the cutoff (and thus reporting poor adherence).
Results: 88 patients completed the VERITAS-PRN between June 1, 2010 and June 30, 2011. Mean total score
was 44.31 (SD 12.77). 12.5% of respondents scored above the Total score cutoff; 9.1% above the Treat cutoff;
6.8% above the Time cutoff; 13.6% above the Dose cutoff; 10.2% above the Plan cutoff; 4.5% above the Remember
cutoff; and 10.2 above the Communicate cutoff.
Conclusion and implications for public health practice: Patients who report nonadherence to episodic
treatment regimens for hemophilia are at risk for poor outcomes. It may benefit patients infusing episodically to
provide education on the importance of infusing immediately upon recognition that a bleeding event has started; to
clarify the appropriate time and frequency for communication with the HTC; and to provide information about how
to reach the HTC at any time.
Abstract 2:
Evaluation of Adherence to Prophylactic Hemophilia Treatment As Measured Using the
VERITAS-Pro Adherence Scale.
Natalie Duncan, MPH
Background: Prophylactic treatment is recommended for severe hemophilia. Non-adherence to a prophylactic

regimen can limit treatment effectiveness and compromise outcomes. The VERITAS-Pro treatment adherence
scale was validated and published in 20101. This scale recognizes treatment adherence as a multi-faceted behavior
and thus measures treatment adherence using six four-item subscales (Time, Dose, Plan, Remember, Skip,
Communicate). The scale takes approximately 10 minutes to complete and is currently validated in English only.
Objectives: The objective of this study is to describe the treatment adherence patterns of patients utilizing
prophylactic regimens to treat hemophilia.
Methods: The VERITAS-Pro is administered during comprehensive clinic appointments of all patients who utilize
prophylactic treatment for hemophilia. Scores are entered into a customized form in the IHTC electronic medical
record. Mean scores and standard deviations are reported. Mean scores are evaluated against pre-determined
subscale scores1 to determine the proportion of patients scoring higher than the cutoff (and thus reporting poor
adherence).
Results: 98 patients completed the VERITAS-Pro between June 1, 2010 and June 30, 2011. Mean total score was
44.31 (SD 18.01). 16.3% of respondents scored above the Total score cutoff; 17.3% above the Time cutoff; 23.5%
above the Dose cutoff; 20.4% above the Plan cutoff; 13.3% above the Remember cutoff; 14.3% above the Skip
cutoff; and 24.5% above the Communicate cutoff.
Conclusion and implications for public health practice: Patients who report nonadherence to prophylactic
treatment regimens for hemophilia are at risk for poor outcomes. These results suggest that adherence problems
are indeed multifaceted and that any interventions to impact adherence must be focused on the specific area of
nonadherence for the particular patient. It may benefit patients infusing prophylactically to assist with schedule
management to help the patient infuse at the recommended time of day and on the recommended days; and to
provide memory aids to ensure that infusions are not forgotten. It may also benefit these patients to clarify the
appropriate time and frequency for communication with the HTC; and to provide information about how to reach
the HTC at any time.
BS12-2: Adherence to Hydroxyurea Among People with Sickle Cell Disease, Patient Perceptions on
Reasons for Nonadherence, Patient Concerns About Hydroxyurea Use, and Patient Knowledge
About Hydroxyurea Benefits and Risks.
Laura DeCastro MD
Dr. DeCastro will discuss recent data on adherence to hydroxyurea among people with sickle cell disease, patient
perceptions on reasons for nonadherence, patient concerns about hydroxyurea use, and patient knowledge about
hydroxyurea benefits and risks. Dr. DeCastro will also address the role of environmental facilitators to adherence
(e.g., provision of health education, perceived social support, joint planning of self-care between parents and children).
BS12-3: Barriers and Facilitators to Adherence with Iron Chelation Therapy Among People with
Transfusion-dependent Blood Disorders, Including Sickle Cell Disease and Thalassemia.
Marsha Treadwell PhD
Dr. Treadwell will present on barriers and facilitators to adherence with iron chelation therapy among people with
transfusion-dependent blood disorders, including sickle cell disease and thalassemia. Dr. Treadwell will report new
results from a quality improvement project that had the goal of establishing an infrastructure for incorporating
health coaching in self-management support strategies with the goal of improving adherence with chelation
therapy. Both adults with sickle cell disease and thalassemia participated, and health coaches included health care
providers and peer educators.
BS13 The Promises and Limitations of Molecular Technology in

Blood and other Rare Disorders
The purpose of the session is to describe the power and promise of technology to contribute to the field of public
health and to provide examples of its translation to clinical practice. This session will highlight how current and
emerging technology can be used not only in the clinical/research laboratory but how it can be adapted to public
health practice with respect to population-based research. Current molecular or innovative conceptual approaches
that take the advantage of emerging technology within context of current and proposed applications will be
discussed.
Presentations:
BS13-1: Genetic Studies in Public Health: Examples and Implications.

Christopher J. Bean PhD
BS13-2: The Role of Re-sequencing in Clinical Laboratory Medicine.

Lora J. H. Bean PhD, FACMG
BS13-3: The Emerging Role of Epigenetics in Public Health.

Tengguo Li PhD
BS13-4: Translation of Technology to a Population: The Inhibitor Project.

Connie Miller PhD
BS14 Use of Administrative Data for Surveillance of Under-Recognized Blood Disorders

Surveillance of the frequency of the occurrence and complications of blood disorders is often very difficult
because of low prevalence and under-diagnosis, both of which render population surveys of limited usefulness.
Administrative health care data, including both hospital discharge and health insurance claims data, can be used
to ascertain recognized cases of disorders for which specific ICD-9 or ICD-10 codes (depending on country, data
source, and time period) exist. For disorders where many people who have the disorder go undiagnosed for many
years because of non-specific symptoms and low clinical awareness, administrative data can also be used to attempt
to assess the extent of under-diagnosis by identifying characteristic patterns of symptoms and ascertaining cases of
suspected undiagnosed cases of disease. Also, in some jurisdictions it is possible to individually link administrative
health care data to clinical data, which include validated medical diagnoses. In those cases, it is possible to match
individuals in a clinical disease registry with administrative data both to examine use of health care services and
complications for people in the registry and to identify others who are not in the registry who have the same ICD-9
or ICD-10 diagnostic codes.
Presenters and Topics:

BS14-1: Prevalence of Diagnoses of Hereditary Spherocytosis, or Congenital Spherocytic Anemia (ICD-
9 code, 282.0).
Charlotte Baker DrPH.
Dr. Baker will present an analysis of MarketScan claims data on the prevalence of diagnoses of hereditary
spherocytosis, or congenital spheroycytic anemia (ICD-9 code, 282.0).
BS14-2: Diagnoses of Hereditary Hemorrhagic Telangiectasia (HHT) (ICD-9 code, 448.0) and of People
with Diagnoses of Other Conditions Suggestive of a Possible Missed Diagnosis of HHT.
Sheree Boulet DrPH.
Dr. Boulet will present the findings of an analysis of MarketScan claims data on diagnoses of hereditary
hemorrhagic telangiectasia (HHT) (ICD-9 code, 448.0) and of people with diagnoses of other conditions suggestive
of a possible missed diagnosis of HHT.
BS14-3: Validity of Administrative Data and the Completeness of the Clinical Registry: Preliminary
Findings of Linking Individual-level Administrative Data from Ontario with Clinical Registry
Data From St. Michael’s Hospital and the Hospital for Sick Children in Toronto.
Marie Faughnan MD .
Dr. Faughnan will present preliminary findings of a project linking individual-level administrative data from Ontario
with clinical registry data from St. Michael’s Hospital and the Hospital for Sick Children in Toronto to help assess the
validity of administrative data and the completeness of the clinical registry by reference to population-based data.
BS14-4: Developing An Algorithm for Identification of Sickle Cell Disease Cases from an
Administrative Claims Database.
Danielle Smith MPH
Background: Sickle cell disease (SCD) is a chronic condition that disproportionately affects a low resource
population and places a large burden on affected individuals and the U.S. healthcare system. Currently, there is
not an algorithm to identify SCD cases not captured by laboratory diagnosis. Since newborn screening (NBS) for
sickle cell disease did not begin in Michigan until 1987, the Michigan Medicaid data warehouse offers an alternative
source for finding cases born prior to 1987 or in other states or countries.
Objectives: The objectives of this study are to develop a predictive model to identify cases of sickle cell disease
from the Michigan Medicaid datawarehouse and to test the model for sensitivity and specificity.
Methods: The patient cohort will consist of all African American patients 18-24 years old with SCD, confirmed
positive through Michigan Newborn Screening and enrolled in Medicaid from 2008 to 2010. Two age- and sex-
matched African American controls will be enrolled per case. Half the cases and controls will be randomized to
a model development group while the other half will be used for model validation. Several health care utilization
characteristics, along with sickle-cell related complications and medications, will be tested as predictors of SCD in
a logistic regression model. The final predictive model will be tested in the second group of patients for sensitivity
and specificity, based on the gold standard of NBS diagnosis.
Results: The study is currently in progress, but it appears that a combination of healthcare utilization variables,
such as emergency department visits with a primary diagnosis of sickle cell disease, along with sickle cell disease-
specific drugs, such as hydroxyurea and iron chelators, will be components of the final model.
Conclusion and implications for public health practice: A successful algorithm for identifying sickle cell
disease cases from the MI Medicaid datawarehouse could provide more accurate measures of prevalence and
incidence of sickle cell disease in adults and provide more accurate data for standards of care and health care
utilization studies.
BS14-5: Methods and Findings from the California Registries and Surveillance System for
Hemoglobinopathies (RuSH) Project.
Lisa Feuchtbaum DrPH, MPH; Susan Paulukonis MA, MPH
Background: The prevalence and health care impact of hemoglobinopathies (sickle cell disease (SCD)
and thalassemia) in California is unknown, as is information about the population demographics, mortality,
complications, co-morbidities, geographic distribution and differences in outcomes among genetic variants of these diseases.
Objectives: The California RuSH project, funded by the National Heart Lung and Blood Institute and administered
by the Centers for Disease Control aims to determine how many people are affected by hemoglobinopathies and
the impact of these disorders on health care services utilization and health outcomes.
Methods: A five-year cohort of unique individuals, from 2004- 2008, identified as having SCD and thalassemia was
constructed using linkage and de-duplicating algorithms on hospital discharge and emergency department data,
death files, California’s newborn screening program, Medi-Cal claims files and data from two large clinic-based
programs at Children’s Hospital Los Angeles and Children’s Hospital & Research Center Oakland. Case definitions
representing 3 levels of diagnostic certainty were created as part of the collaboration with the other six RuSH
states and based on availability of laboratory-confirmed diagnosis and combinations of selected ICD 9 codes and
procedure/drug codes.
Results: A count of 5,310 confirmed and probable cases of SCD and 723 confirmed thalassemia cases
was determined based on linked de-duplicated case counts from the data sources. Selected demographic
characteristics, including the average age, age of death, most common reasons for hospitalization and emergency
department admissions and other outcomes will be presented. The utility of each data source for case-finding will
also be explored. Public health surveillance of blood disorders is significantly improved by linking multiple data
sources. Case count is greater than with any one data source, diversity of case characteristics is improved, and
more is known about the cases identified.
Conclusion and implications for public health practice: The dataset created through the linkage of mutliple
data sources provides an opportunity for population-based surveillance and detailed analysis of the impact of
hemoglobinopathies on healthcare services utilization and health outcomes. This data is essential for public health
agencies and state authorities to allocate adequate resources to meet the medical and social service needs of
hemoglobinopathy patients in the coming decade.
BS15 Screening of Educational Videos

This one and a half hour session features a number of films highlighting patient stories and provider perspectives
on blood disorders such as hemophilia, sickle cell disease, and deep vein thrombosis and pulmonary embolism.
These films help to: visually depict the personal impact of these conditions; raise awareness of the work being
conducted in the field of bleeding and clotting disorders; increase knowledge and awareness of the conditions
themselves; reduce negative stereotypes; reinforce and help disseminate key prevention messages; and inform
policymakers and stakeholders of the significant threat these conditions pose to public health. A collection
of 5-10 minute video clips will be shown followed by a brief question and answer/discussion period with
the video producer.
BS16 Hemoglobinopathy Initiatives

BS16-1: Building a Statewide Collaborative Hemoglobinopathy Team.

Phyllis Sloyer RN, PhD, FAHM, FAAP; Lanetta Jordan MD, MPH, MSPH; Russell Kirby PhD, MS, FACE; Lois Taylor RN, BSN, CPM; Angela
Finch; Lauren Whiteman MPH, CPH; Jean Paul Tanner MPH; Alexia Makris MSc
Background: To establish a Registry and Surveillance System for Hemoglobinopathies (RuSH) in Florida,
stakeholders in Florida recognized the need for a diverse partnership including government, academic and
community hospital and practitioner stakeholders.
Objectives: To build a sustainable statewide coalition that will achieve the objectives of RuSH and serve as an
example for future state public/private partnership health initiatives.
Method: The three stakeholder institutions for RuSH have unique functions: Children’s Medical Services
(CMS) operationalizes the confirmatory testing, follow-up and case management for children up to age 21
with a hemoglobinopathy. The University of South Florida (USF) has expertise in data linkage and the South
Broward Hospital District (SBHD) has expertise in community outreach and a large database of individuals with
hemoglobinopathies. These institutions conduct weekly teleconferences to facilitate communication and action
items among the group. To obtain input on the RuSH objectives and processes, three advisory groups were created:
Community Based Organizations (CBOs) (both hemoglobinopathy CBOs and CBOs that work with emerging
populations), composed of hematologists, individuals and family members affected by hemoglobinopathies,
epidemiologists, and faith based organizations provide general guidance and suggestions on the project. The
Clinical Committee includes adult and pediatric hematologists and primary care physicians. The role of this group
is to offer clinical guidance on data collection and advice on gaining medical community buy-in. The Community
Partners Committee consists of state funded sickle cell disease community outreach coordinators and CBOs. This
group offers guidance on how to outreach to the hemoglobinopathy community.
Results: The FL RuSH team has been successful in its collaboration, in that the group has completed all of the
procedural ground work needed to begin data collection. The advisory groups have been successful in providing
insight and guidance for hemoglobinopathy stakeholders.
Conclusions and Implications for Public Health Practice: The partnership formed by CMS, USF, and SBHD
will provide insight into the gaps in services, utilization patterns by geographic location, mortality and
co-morbidities associated with hemoglobinopathies. These data will be able to influence practice, provide
guidance to advocacy stakeholders and needed information to legislatures on the state of care for
Hemoglobinopathies in Florida.
BS16-2: Cultural and Health Policy Implications of Sickle Cell Disorder in Ireland.
CEsther O.Pepple Onolememen MSW, (NQSW), HDipSocPol, BA, (ED)
Background: Governmental policies recognize the health care needs of Irish ethnic minority groups. Still, a
particular ethnic group with malignant health care condition −Sickle Cell Disorder (SCD) have received delayed
public policy responses (Anionwu & Atkin, 2001; Dyson et al, 2007;Onolememen, 2008). With SCD on the rise in
Ireland since its expansion, there has been increasing clinical interests in haemoglobinopathies on how to improve
existing health care for families affected (McMahon & Smith 2000, McMahon et al 2001and O’Callaghan, 2002). Yet,
public policy and mainstream interest in this area has been lagging (Onolememen, 2008). Therefore, this thesis
focuses on the public policy implications of the growth of Sickle Cell Disorder in Ireland in a comparative analysis
of policy responses to haemophilia in Ireland.
Objectives: The main objective focuses on (1) Service delivery within each particular population group (2) Access
to services (3) Knowledge of existing services and possible barriers for groups. This aims to provide evidence that
will support or counter competing explanations of existing global knowledge of immigrant levels of health care
access hence, observing by variation. This will ascertain whether the: Level of service provision for immigrant
communities in Ireland is functional to the time the condition has been prevalent, and is adequate to the need
of the SCD group or whether it is inadequate? Lag in service provision for immigrants is due to a gap in policy
response, political pressures, or newness of the health condition in question compared to a condition that has been
known? Low take-up level for immigrants is due to a departmental lag, other barriers to access or their knowledge
of existing services?
Methods: Sample families living with Sickle Cell Disorder and haemophilia (control group), and sample health service
practitioners and policy actors in the Republic of Ireland will be recruited using a mixed method approach (ongoing).
Results: Results are envisaged to close an existing knowledge gap by providing a basis for making a theoretical
affirmation of what determines policy responses to immigrant health care needs.
Conclusion and implications for public health practice: This is envisaged to inform the future direction of
immigrant health care policy and its socio-cultural implication in practice in Ireland.
BS16-3: Organization of a National Network for Pediatric Sickle Cell Disease in Italy.
Raffaella Colombatti MD, PhD; Silverio Perrotta; Maddalena Casale MD; Andrea Ciliberti; Gian Carlo Del Vecchio; Domenico De
Mattia; Benedetta Fabrizzi; Paola Giordano; Valentina Kiren; Silverio Ladogana; Nicoletta Masera; Agostino Nocerino; Lucia Dora
Notarangelo; Giovanni Palazzi; C. Pasqualini; Anna Pusiol; Piera Samperi; Paola Saracco; Marco Zecca; Giovanna Russo; Laura Sainati.
Background: The World Health Organization (WHO) recognizes inherited hemoglobin disorders as a global public
health problem. Sickle Cell Disease (SCD) has become the paradigm of immigration hematology in Europe. A
network for treatment and care of thalassemia patients was developed in Italy since the seventies, involving centers
located in the Center and South, where the majority of thalassemia patients lived; guidelines for the Management
of Thalassemia were implemented and are known by physicians. On the contrary, SCD is an emerging disease
and centers focused on its care are rare. No common policy of diagnosis and treatment had been developed and
treatment was mainly case- or locally-directed. Moreover, the majority of SCD patients are African immigrants
living in Northern Italy where hemoglobinopathies are less known.
Objectives: Develop Guidelines for the Management of SCD children in Italy, that could be accessed by all those
involved in the care of SCD children. Create a national working group focused on pediatric SCD.
Methods: Italian Association of Pediatric Hematology Oncology (AIEOP) Centers were invited to the SCD Working
Group. Issues to be addressed in the Guidelines were chosen by the group and every topic was developed by a
subgroup in a single document. Each document included a brief description of the state-of-art, recommendations
with ABC strength and references. Each document was revised by the entire group and modified accordingly.
Results: 21 pediatric hematologists from 13 centers (North 8, Center 1, South 4) met 5 times from 2008 to
2010. The Guidelines (22 chapters-242 recommendations) explore milestones of SCD diagnosis, prevention and
treatment, tailoring them to the Italian public health system and drug availability (Amoxicillin prophylaxis because
oral Penicillin is not available, Transcranial Doppler performed by Adult Neurosonologists, pain protocol for the
Emergency Room). The document was reviewed by external experts-patients associations and published in the
AIEOP website. The SCD working group began rising awareness on SCD through scientific meetings.
Conclusion and implications for public health practice:The Organization of a National Network and the
development of National Guidelines for Pediatric SCD in Italy are the first steps to implement the WHO suggestion
“to design, implement… comprehensive national integrated programs for the prevention and management of SCD”
BS16-4: Creating a Population-Based Hemoglobinopathies Surveillance Project.

Mary Hulihan MPH; Lisa Feuchtbaum MPH, DrPH; Lanetta Jordan MD, MPH, MSPH; William Young PhD; Yvonne Greene; Ying
Wang PhD, MPH; Adeline Barwick; Ellen Werner PhD; Althea Grant PhD
Background: Many surveillance projects have studied chronic conditions over the years, including cancer,
asthma, and kidney disease. However, there have not been any population-based surveillance programs for
hemoglobinopathies. In February, 2010, the RuSH (Registry and Surveillance of Hemoglobinopathies) project
started as a cooperative agreement between two Federal Partners (CDC and NIH) and seven state Health
Departments (CA, FL, GA, MI, NY, NC, and PA). The objective of RuSH was to obtain prevalence and incidence
estimates for the number of people with hemoglobinopathies in these seven states. Data about demographics,
health care utilization and outcomes, and mortality was also collected.
Objectives: The RuSH project’s data came from public health records, administrative datasets, clinical records,
and state registries, and all information was de-identified by the state health department before being sent to CDC.
However, before the data collection could take place, the patients being included in this project had to be defined,
as well as the exact information being collected on each patient.
Methods: Members from the RuSH working groups joined with CDC staff, external experts, and each other to
determine which data sources should be used, to create case definitions, and to draft a data dictionary for the
project. This collaborate on took place via email communication, monthly phone calls, and two in-person meetings.
Results: The resulting documents will serve as the basis for case finding across the multiple data sources during
the 2 year surveillance project. Future evaluation will be needed to determine their validity. Possible evaluation
strategies may include further review of medical charts, laboratory test review, and use of electronic medical
records.
Conclusion and implications for public health practice: The case definitions, data dictionary, and
data collection methods used in this project will be used to determine population-based figures related to
hemoglobinopathies. This will be the first time that comprehensive estimates are available for advocates and policy
makers. Additionally, the strategies employed by this project may serve as a model for other chronic conditions.
BS17 Identifying Information Needs Among Children and Teens Living with Hemophilia.
Background: The emotional needs of children affected by bleeding disorders change as they mature. As children
(ages 5 to 12) and adolescents (ages 16 to 19) with bleeding disorders undergo major life transitions, they, their
parents, and other concerned adults need specific information, support, and resources to better manage their
hemophilia.
Objectives: CDC and NHF partnered to research relevant available information and resources, find gaps in
primary subject areas, and determine the most appropriate messages to help these youth manage their condition.
Methods: Phase 1 involved performing an Internet-based environmental scan and an inventory of NHF’s resource
center, a collection of nearly 13,000 items. Phase 2 involved conducting formative research with teens (16–19)
living with hemophilia and parents of children (5–12) living with hemophilia to identify information gaps and
translate their expressed needs into effective messages and materials to encourage behavioral changes. A mix of
in-person and online/telephone focus groups were conducted between January and June 2011.
Results: The resources scan and inventory showed that while most materials focus on educating parents and
families of newly diagnosed children, less is available for young children and adolescents about transition issues.
Gaps were identified in materials dealing with acceptance, self-care, progression through school, vocational/
career planning, family planning, middle age, and retirement. Focus groups revealed that adolescents want more
information on disclosing their condition (to peers, teachers, coaches, health care providers, etc.), participating
in sports, and becoming more independent (from learning to self-infuse and ordering their own medication and
supplies to tracking their own care). Teens emphasized that videos and social media are their preferred formats
for message delivery. Parents and teens expressed that a video portraying tactics for talking with others about
hemophilia would be beneficial to them.
Conclusion and implications for public health practice: Formative research is key to understanding and
identifying the needs, attitudes, and beliefs of individuals in the target audience and to developing messages that
will encourage positive behavioral changes.
Presentations:
BS17-1: Background/importance of the research.
Neil Frick MS
BS17-2: Methodology Used.

Gretchen Simmons MPH, MCHES
BS17-3: Formative Research Findings From the Environmental Scan and Formative Focus Groups.
Dianne Fragueiro MPH
BS17-4: Message development (creation of the video prototypes), message testing via focus groups,
and refinement of the messages.
Mel Miller MA
BS17-5: Showing of Final Videos
BS18 Strategy and Implementation of Surveillance and Research Registries

for the Bleeding Disorders Community
BS18-1: ATHNdataset: A Robust Surveillance and Research Infrastructure for the

Bleeding Disorders Community.
Barbara Konkle MD
and;
BS18-2: Provider and Patient Centric Tools for Research and Surveillance.
Crystal Watson
Background: Collecting standardized data useful for surveillance and research across U.S. providers that are
geographically and organizationally diverse presents real challenges. Since 2006, the not-for-profit American
Thrombosis and Hemostasis Network (ATHN) and its 127 Affiliates delivering comprehensive multi-disciplinary
care to over 30K patients have developed, tested and implemented an electronic U.S. infrastructure and patient-
centered technology tools for surveillance and research.
Objectives: This three-part session will describe the experience to date and lessons learned in developing and
implementing the electronic information infrastructure and related patient tool.
Methods: Part 1 will characterize best practices applied to the web-based bleeding disorders registry to facilitate
the collection of standardized, longitudinal data across the federally funded treatment center network and describe
lessons that can be applied to other rare disorders. Part 2 will share findings to date related to the demographic,
disease and treatment patterns of patients who have opted into a limited data set, the ATHNdataset, for research
purposes. Part 3 will report on progress in deploying a new patient centric technology tool for self-reporting bleeds
and infusions, important measures of outcome.
Results: The infrastructure provides a mechanism for collecting and reporting patient demographic, genetic,
diagnostic and treatment data, sharing that data across the network as patients move from one Affiliate to another
throughout their lifetime, tracking compliance with prevention and immunization standards of care, generating
queries needed for outcomes analysis, research and reporting to government agencies such as CDC. As of
September 2011, over 5,000 patients are enrolled; with over 7,500 expected prior to the conference. To date, this
tool known as ATHNadvoy has enabled patients to log over 50,000 clinical episodes to track bleeding frequency,
location and pain, and infusions administered for prophylaxis or treatment.
Conclusion and implications for public health practice: The experience and lessons are applicable to other
rare disorders with public health significance.
BS18-3: Informatics Challenges in Public Health Surveillance Systems.

Ying Su MD
Background: In the past three years, the DBD Informatics team has been a major resource in supporting the
DBD's public health surveillance, research, and health promotion activities through developing the electronic
surveillance/registry and reporting systems for various surveillance projects that have been ongoing at the DBD. At
initial phase of the electronic surveillance system development projects, the team faced overwhelming challenges
in meeting the needs of the electronic system development.
Objectives: The objectives are to present how the informatics team conducted a number of the successful projects
that have applied the IT project management principles, business process improvement, and industrial best
practices to improve overall performance and development processes of the electronic surveillance systems.
Methods: This presentation will describe how the team developed the IT development strategies, established the
software development life cycles processes, and conducted activities to meet the projects' goals, and improved the
application performance and data quality. The lessons learned from our experience will also be shared with the
audiences.
Results: Illustrated progress report on various phases of the projects, milestones and achievements will be
presented.
Conclusion and implications for public health practice: The presentation will be concluded with discussion
on how the team plans to continuously improve the design, development, and deployment of the electronic
surveillance systems.
BS18-4: Trends in Care of Patients with Bleeding Disorders: 20 Years of Data.

Brenda Riske MS, MBA, MPA; Judith Baker MHSA
Background: For over 20 years, the U.S. Hemophilia Treatment Center Network (USHTCN) has collected
aggregate data representing number and diagnoses of patients with bleeding disorders served. This presentation
will highlight the improvement in the USHTCN system of care for persons with bleeding disorders. In 1990, federal
funding agencies mandated the organization of hemophilia treatment centers into 12 regions that became the
USHTCN. The organization included development of standard positions for regional coordinators/directors. The
regionalization also allowed for standardized data collection and organization.
Objectives: Present a successful regional network of care in the U.S. Present over 20 years of data from a national
aggregate data set from the US Hemophilia Treatment Center Network.
Methods: Annually, the 130+ U. S. hemophilia centers utilize a common data collection instrument (Hemophilia
Data Set [HDS]) to collect diagnosis, age, mortality and HIV related data. In the mid-1990s, gender was added as an
additional demographic identifier. In 2001, collection of data on thrombophilias and other rare bleeding disorders
was added to the HDS. The USHTCN collect these data using uniform definitions and methods managed by the
regional coordinators and directors.
Results: The growth rates in patients served by the HTCs as represented by the HDS has outpaced the US
population growth rate due primarily with the addition of women served by the HTCs, a 40% increase from 2001
to 2010. Other growth came from patients with hemophilia A, B, and thrombophilias served by the HTCs. In 1990,
17,167 patients were served and in 2010, the number was 34,343 a doubling of patients served vs. a 25% increase
in US population. Additional capacity by HTCs has also been added through the HTCs developing outreach clinical
sites that serve geographically dispersed patients.
Conclusion and implications for public health practice: The regional structure of the USHTCN allowed
for uniform data collection and increased capacity for the USHTCN. This presentation will focus on the HDS
and changes over the past 20 years of data collection. The USHTCN will be also be described allowing for
standardization and improved communication specifically allowing for public health systems improvement.
BS19 Morbidity and Mortality of Venous Thromboembolism

BS19-1: Venous Thromboembolism (VTE) Attack Rates and Total US VTE Events in 2005 among
Currently- or Recently-Hospitalized vs. Community Residents: A Population-Based Cohort Study.
John A. Heit MD; Aneel A. Ashrani MD, MS; Cynthia L. Leibson PhD; Tanya M. Petterson MS; Daniel J. Crusan BS; Kent R. Bailey PhD
Background: Estimates of the annual number of VTE events in the US vary widely, and the number of potentially
preventable events is unclear.
Objective: To estimate VTE attack (incident plus recurrent VTE) rates by age and gender, both related and
unrelated to current or recent hospitalization; and to project the total number of VTE events in the US in 2005,
related and unrelated to hospitalization among Caucasian Americans.
Methods: Using Rochester Epidemiology Project resources, we identified all Olmsted County, MN residents with
incident or recurrent VTE over the 40-year period, 1966-2005, categorized by occurrence during, or within 90 days
of hospitalization. Using the number of hospital-related incident or recurrent VTE events in 2005 as the numerator,
and the number of person-years in hospital as the denominator, we estimated 2005 hospital-related VTE attack
rates by age and gender. Rates in community-dwelling residents were obtained by using all remaining VTE cases
as the numerator, and census-based person-years (subtracting hospitalized person-years) as the denominator. To
calculate confidence intervals, we assumed incident and recurrent events follow a Poisson process. Applying these
rates to the number of US hospital bed-days in 2005 (estimated from the Healthcare Utilization Project [HCUP])
and US census data, we estimated the 2005 total number of hospital-related and non-hospital-related VTE events.
Results: Overall Olmsted County 2005 VTE attack rates related to hospitalization for ages 1-39, 40-64, 65-84
and ≥85 years were 262, 753, 694 and 445 per 1000 hospital bed-years, respectively, while rates unrelated to
hospitalization were 0.3, 1.3, 3.6 and 6.9 per 1000 person-years, respectively; for each age group, rates varied
by gender. An estimated 124 (95% CI: 97; 151) thousand VTE events were related to hospitalization among
Caucasians in the US in 2005; and 237 (95% CI: 196, 277) thousand VTE events were unrelated to hospitalization.
Of the total estimated events (361 thousand), only 34% were related to hospitalization.
Conclusions: While hospital-related VTE attack rates are 2-3 orders of magnitude higher than rates among
community-dwelling residents, the community population is much larger than the hospitalized population such
that the majority of VTE events are unrelated to hospitalization. Primary and secondary VTE prophylaxis among
community-dwelling residents along with continued primary prophylaxis of hospitalized residents will be required
to reduce the number of VTE events occurring in the US. Future research should be directed toward stratifying
VTE risk among community-dwelling residents.
BS19-2: How Many Deaths Are Caused by Pulmonary Embolism in the United States?
Scott D Grosse PhD; James Tsai MD, MPH; Hani K Atrash MD, MPH; J Michael Soucie PhD
Background: Many experts state that from 100,000 to 300,000 deaths in US each year are due to venous
thromboembolism (VTE), almost all of which are due to pulmonary embolism (PE). On the other hand, national
vital records indicate that fewer 40,000 deaths each year are associated with VTE, of which approximately 28,000
are associated with PE and approximately 12,000 with deep vein thrombosis (DVT), as either a contributing or
underlying cause of death.
Objectives: To provide an evidence-based estimate of the numbers of deaths due to PE in the US each year that
can provide a baseline for assessing the public health impact of efforts to prevent VTE.
Methods: A comprehensive narrative review of published reports documenting the occurrence of PE in autopsy
studies, death certificates, or clinical records and estimates of PE deaths based on analytical models.
Results: Deaths from PE are under-recorded in vital statistics but to an unknown extent. Based on autopsy
data, perhaps 5% of 800,000 acute care hospital deaths in the US are due to PE. A lower percentage of the
1.6 million non-hospital deaths are due to PE. Overall, perhaps 3-4% of deaths are due to PE, or 75,000 to
100,000 deaths per year.
Conclusion and implications for public health practice: The most likely range of deaths from PE in the US
each year is 60,000 to 100,000. Although this is lower than the range suggested by many experts, it makes PE the
sixth leading cause of death in the US, behind accidents and ahead of Alzheimer disease and diabetes. As many as
half of deaths due to PE are associated with hospitalization; up to half of those are potentially preventable.
BS19-3: Emergency Department Visits with a Diagnosis of Venous Thromboembolism, NHAMCS 1994-2008.
Hussain Yusuf MD, MPH; James Tsai MD, MPH; Azfar-E-Alam Siddiqi MD, PhD; Sheree Boulet DrPH
Background: Substantial morbidity and mortality may result from venous thromboembolism (VTE), which
includes deep vein thrombosis and pulmonary embolism. Many VTE cases are diagnosed in outpatient settings,
such as emergency departments.
Objectives: To estimate and characterize emergency department visits with a diagnosis of VTE.
Methods: We analyzed data from the National Hospital Ambulatory Medical Care Survey (NHAMCS) for the years
1994–2008. NHAMCS uses a complex multistage sample design to survey non-federal short-term care hospitals
across the United States. Patient information, including a principal diagnosis and up to two additional diagnoses,
as well as demographic and other information are obtained from samples of emergency department and outpatient
visits from each hospital.
Results: Between 2004-2008, an average of 339,804 emergency department visits occurred each year in the U.S.
with a diagnosis of VTE, which was a rate of approximately 114 (95% CI 96−132) per 100,000 population. The rates
of emergency department visits with a diagnosis of VTE per 100,000 population during 1994−1998 and 1999−2003
were 77 (95% CI 61−93) and 84 (95% CI 69−98), respectively. For the period 2004−2008, the rate of visits with a
diagnosis of VTE was much higher among patients 61 years of age and older when compared to younger patients.
The rates were substantially higher among African Americans compared to whites, though CIs overlapped. Among
emergency department visits between 1994-2008, selected characteristics that significantly differed between visits
with a VTE diagnosis and visits without a VTE diagnosis included gender (61.2% female among VTE visits vs.
53.4% female, among non-VTE visits, p<0.01), the patient having been discharged from a hospital in the past seven
days (11.4%, vs. 2.7%, p<0.01), and the patient residing in a nursing home (7.6%, vs. 2.2%, p<0.01).
Conclusion and implications for public health practice: A substantial number of emergency department visits
occurring each year are associated with VTE. Groups with higher likelihood of VTE related emergency department
visits may include older adults, African Americans, women, those recently discharged from a hospital, and people
residing in a nursing home.
BS19-4: In-Hospital Deaths Among Hospitalizations With Pulmonary Embolism in the United States:
Results From the 2001−2008 National Hospital Discharge Survey.
James Tsai MD, MPH; Scott D. Grosse PhD; Althea M. Grant PhD; Nimia Reyes MD, MPH; W. Craig Hooper PhD; Hani K. Atrash MD, MPH
Background: Pulmonary embolism (PE) is responsible for approximately 30,000−80,000 deaths annually in the
United States.
Objectives: The purpose of this study was to present nationally representative estimates of in-hospital deaths
among hospitalizations with a diagnosis of PE in the United States.
Methods: We analyzed data from the 2001−2008 National Hospital Discharge Survey to estimate in-hospital deaths
(i.e., annual number and case-fatality rate) among 2,349,500 hospitalizations with a diagnosis of PE (i.e., first-listed
or any-listed) and among subgroups stratified by age, sex, race, days of hospital stay, type of admission, cancer,
pneumonia, and fractures. We produced adjusted rate ratios (aRR) and 95% confidence intervals with multivariate
regression models by using demographic and medical risk factors as predictors; status of in-hospital death was
used as an outcome variable.
Results: During the study period, the annual number of in-hospital deaths ranged from 3,600 to 5,870 and from
14,870 to 18,560 among hospitalizations with first-listed PE and any-listed PE, respectively. The case-fatality rates
for first-listed PE and any-listed PE, respectively, declined from 5.9% and 11.4% in 2001−2002 to 2.4% and 7.1%
in 2007−2008 (P<0.05 for linear trend). Regardless of the listing position, we observed an increased likelihood of
in-hospital death in subgroups of hospitalizations with advanced ages (aRR=1.82−8.48), less than 7 days of hospital
stay (aRR=1.43−1.57), cancer (aRR=2.10−2.28), pneumonia (aRR=1.79−2.20), or fractures (aRR=2.18) (except for
first-listed PE), when compared to their respective counterparts. In addition, we observed an increased likelihood
of in-hospital death for first-listed PE in hospitalizations of women when compared to those of men (aRR=1.45).
Conclusion and implications for public health practice: The estimated annual number of in-hospital deaths
among hospitalizations with a diagnosis of PE remained relatively stable during 2001−2008, despite the decline in
the case-fatality rates for the same period. Therefore, PE remains an important clinical and public health concern
in United States. The results of this study provide support for identifying and implementing effective evidence-
based prevention strategies among hospitalized patients including those with cancer, pneumonia, and fractures.
BS20 Iron Out of Balance

BS20-1: Iron Overload in Long-Term Survivors of Childhood Cancer.

Jonathan D. Fish MD; Kiranmye Reddy MD; Jennifer Eng MD; Claire A. Carlson RN, BSN; Jill P. Ginsberg MD
Background: Children with cancer often require extensive pRBC support for therapy-related anemia. Iron
overload has an overlapping long-term toxicity profile with chemotherapies, although few centers track iron loading
during treatment. Long-term survivors of childhood cancer represent ~1:450 young adults in the US, and iron
overload may contribute to survivors’ morbidity.
Objectives: We aimed to: (i) quantify transfusion volumes in children treated for a variety of malignancies; and
(ii) directly measure liver iron concentration (LIC) and cardiac iron loading in survivors who are at high-risk, along
with related laboratory values.
Methods: Patients were 6.5-25 years; treated for AML, high-risk ALL, Ewing sarcoma, osteosarcoma,
rhabdomyosarcoma, neuroblastoma, or underwent HSCT; were at least one year off-therapy and from their last
transfusion; and received all therapy at participating centers. Diagnosis, age, weight at diagnosis, chemotherapy
received, total pRBC total iron, ferritin, TIBC and iron saturation were obtained. Patients who received > 120ml/
kg pRBC or had ferritin > 1,000mcg/L underwent hepatic R2 and cardiac T2* MRI, ECHO, assessment of liver and
endocrine function, and analysis for hereditary hemochromatosis.
Results: Among 68 patients enrolled, transfused volumes ranged from 299mL to 25,080mL (mean 6,168mL).
To date, 25 patients completed second level studies including LIC measurement by MRI. LIC (in mg/g dry
weight) ranged from 0 to 15.6 (mean 5.2), and eight patients had LIC>7. LIC correlated with total volume of
pRBC transfused (Spearman correlation coefficient 0.71737, p<0.0001). There were several patients whose LIC
seemed disproportionately high given their pRBC volume, although all fell within the regression’s 95% confidence
interval. None of these patients had an identified hereditary hemochromatosis mutation or ongoing transfusion
requirements. No patient had identifiable cardiac iron loading.
Conclusion and implications for public health practice: Iron overload is under-recognized and prevalent in
survivors of childhood cancer. Iron loading is directly correlated with transfusion volume, and likely modified by
genetic polymorphisms and environmental co-exposures such as types and cumulative doses of chemotherapies.
Iron overload may exacerbate chronic illness in the >60% of childhood cancer survivors who already suffer from
morbidity related to their prior treatment. Given the prevalence of childhood cancer survivors, iron overload in this
population represents a public health concern.
BS20-2: Ethnicity Influences the Risk of Severe Iron Deficiency Anemia in Toddlers.
Ashutosh Lal MD; Lun Li BA; Jeanette Nichols PNP; Alison Matsunaga MD
Background: Early childhood is a high-risk period for nutritional anemia. The diagnosis of severe anemia in a child
can serve as sentinel marker for the wider prevalence of iron deficiency within a population.
Objectives: To identify the incidence of severe iron deficiency anemia (IDA) in children from an urban population.
Methods: Retrospective analysis of children with severe IDA seen in the hematology clinic over a 10-year period.
Inclusion criteria were microcytic anemia with hemoglobin <7 g/dL, and low serum ferritin and transferrin
saturation values.
Results: We identified 78 children with severe iron deficiency anemia. The age distribution showed a sharp
spike in the second year of life. Only 1% of the subjects presented at <1 year, 17% between12-18 months, 31%
between 18-24 months and 17 % between 24-30 months. The number of children >3 years fell rapidly. The median
hemoglobin was 5.0 g/dL with a range from 1.8 to 7.0 g/dL. Among 21 children with hemoglobin <4 g/dL, 20 (95%)
were 12-36 months. Transfusions were given to 39/78 (50%) children to manage anemia. Children of Asian ethnic
background formed 31% of the group, followed by Hispanic (23%), and Caucasian (13%) ethnic groups. Only
2/78 (3%) children were African-American, although persons of African-American ethnicity form 36% of the area
population. In children <3 years, the median milk consumption was 32 oz. per day with range from 8-60 oz./day. No
other significant contributor to the development of iron deficiency was discovered in this population. We observed
no trend to suggest a decrease in the number of cases diagnosed per year over a 10-year period.
Conclusion and implications for public health practice: Our data on severe IDA indicate that nutritional iron
deficiency may be widespread among young children. Immigrant populations are at greatest risk, while African-
American children are unlikely to develop severe iron deficiency during the second year of life. Analysis of the
differences in infant dietary practices between ethnic groups may provide suggestions that can be implemented for
population-wide preventive strategies.
BS20-3: Serum Transferrin Saturation and Inpatient Mortality and Hospital Length of Stay Among
Medicare Beneficiaries.
Arch Mainous PhD; Charles Everett PhD; Vanessa Diaz MD, MS; Michele Knoll MA; Mary Hulihan MPH; Althea Grant PhD
Background: Although elevated serum transferrin saturation (TS) is associated with increased mortality risk and
disease development it is unclear whether it is associated with worse hospitalization outcomes.
Objectives: The purpose of this study was to evaluate in a large, nationally representative cohort the association
between elevated serum transferrin saturation and hospital outcomes among Medicare beneficiaries aged 65 and older.
Methods: We conducted longitudinal analyses of the nationally representative, third National Health and Nutrition
Examination Survey (NHANES III) linked to Medicare claims from 1991 through 2006 for Medicare beneficiaries
aged 65 and older at baseline. TS collected on each participant at baseline was characterized as: <20%, 20-54.9%
and >55%. Risk of hospitalization, length of stay in the hospital and death in the hospital were primary outcomes.
Analyses were adjusted for age, sex, race/ethnicity, education and severity of illness.
Results: A survival analysis for risk of future hospitalization indicated no difference between persons with TS
>55% and those in the reference category of 20-54.9%. However, among individuals who were hospitalized during
the study period (79.4%), elevated TS (OR=2.54; 95% CI= 1.05-6.12) or low TS (OR=1.31; 95% CI= 1.07-1.62)
had a significantly increased risk of death than those with moderate TS levels. Individuals with elevated TS had
longer average length of stay per hospitalization (8.94 days, p=.013) than individuals with moderate TS levels (6.11
days). Further, individuals with elevated TS had longer average hospital days per year (4.18 days, p=.042) than
individuals with moderate levels of TS (2.25 days).
Conclusion and implications for public health practice: Elevated TS is associated with worse hospitalization
related outcomes including death in the hospital and length of stay per episode. More aggressive screening of
elevated TS may be warranted.
BS20-4: Calcium Channel Blocker Use and Serum Ferritin in Adults with Hypertension.
Arch Mainous PhD; Eugene Weinberg PhD; Vanessa Diaz MD, MS; Sharlee Johnson MA; Mary Hulihan MPH; Althea Grant PhD
Background: Iron overload cardiomyopathy is becoming more prevalent, and early recognition and intervention
may alter outcomes. Calcium channels are key transporters of iron under iron-overloaded conditions, and
potentially represent a new therapeutic target for iron overload.
Objectives: The purpose of this study was to examine the relationship between calcium channel blocker (CCB)
use and serum ferritin among adults with diagnosed hypertension.
Methods: We analyzed the nationally representative NHANES (National Health and Nutrition Examination Survey)
1999-2002 for adults ≥ 40 years with diagnosed hypertension. The association between CCBs and serum ferritin
was assessed using a t-test and adjusted multiple regressions.
Results: The study population included 2143 individuals (representing 37.4 million individuals, 42.0% males).
12.6% of the population reported taking CCBs in the last month. Individuals taking CCBs had lower mean serum
ferritin (129.3 ng/mL versus 154.5 ng/mL, p=0.02). After adjusting for age, sex, menopause and hysterectomy
status for women, and race/ethnicity, mean serum ferritin for individuals taking CCBs was 26.6 ng/mL lower than
for those not taking CCBs (p=0.01). In an adjusted regression, individuals who took CCBs and had a daily vitamin
C intake of ≥ 500 mg had a mean serum ferritin that was 60.1 ng/mL lower than people not taking CCBs and with
daily vitamin C <500mg (p<0.001).
Conclusion and implications for public health practice: This study found an association between use of CCBs
and lower serum ferritin levels in individuals with hypertension. Further studies are needed to assess the possible
use of CCBs as non-traditional chelating agents for treatment of iron overload cardiomyopathy.
SS6 Effectiveness of Hydroxyurea in Children with Sickle Cell Disease

Background: Sickle cell disease (SCD) is characterized by acute and chronic complications mediated by hemolysis
and vaso-occlusion. Hydroxyurea is used as a disease-modifying medication to prevent acute and possibly chronic
complications of SCD. Clinical trial data indicate that hydroxyurea is safe and efficacious for children with SCD.
There is increasing evidence that, in clinical practice, hydroxyurea reduces pain, acute chest syndrome, transfusion
requirements, hospitalizations, and associated costs and improves health-related quality of life and survival.
Unfortunately, hydroxyurea in underutilized. There are barriers to implementation at the provider, patient, and
systems level. A major barrier to provider prescription and ultimate effectiveness is poor medication adherence; a
common problem for all chronic illnesses. In a survey of pediatric hematologists, a primary barrier to prescription
of hydroxyurea was concern about medication adherence. In observational studies, the rate of good adherence
ranges from 60-80%. In order to improve the effectiveness of hydroxyurea in clinical practice, clinicians need a
“tool box” of strategies to help patients adhere with hydroxyurea.
Objectives: In this session, we will discuss the efficacy and effectiveness of hydroxyurea for children with SCD
and highlight the importance of ongoing T3/T4 research to improve the effectiveness of hydroxyurea. We will
review the current utilization of hydroxyurea and discuss reasons why hydroxyurea is underutilized. We will focus
on barriers to adherence with hydroxyurea, highlighting available data from clinical trials and observational studies.
Lastly, we will discuss strategies to improve implementation: health care provider and patient education; evidence-
based guidelines; optimization of hydroxyurea prescription through the use of genetics and pharmacogenetics; and
a “tool box” to improve medication adherence.
Conclusion and implications for public health practice: SCD is a global disease which results in significant
morbidity and mortality starting at a young age. SCD has important public health implications with high individual
and societal costs. Efficacious therapy with hydroxyurea is not fully realized due to barriers at patient, provider
and system levels. Resources should be allocated to improve the implementation of hydroxyurea within and outside
of the United States.
Presentations:
SS6-1: Current Data on Efficacy and Effectiveness of Hydroxyurea in Children with

Sickle Cell Disease.
Win Wang MD
SS6-2: Implementation of Hydroxyurea in Clinical Practice.

Russell E. Ware MD
SS6-3: Overcoming Barriers to Implementation of Hydroxyurea.

Courtney D. Thornburg MD
SS7 Sickle Cell Disease: Epidemiology and Disease Burden in Low-Income Countries.
Session objectives: Knowledge of the evidence-based map of the worldwide distribution of the sickle cell gene;
Understanding of the high burden of SCD in Central Africa based on data from pilot newborn screening programs
and a comprehensive care centers in the region; Recognition of the previously underestimated burden of SCD in
regions of India, as well as the unique features of disease morbidity and causes of mortality.
Abstract: In recent years, the World Health Organization and the United Nations have declared sickle cell disease
(SCD) as a public health problem in countries in sub-Saharan Africa, certain regions of India and the Caribbean.
In these regions, newborn screening is not systematic practice, and facilities for diagnosis and treatment are
lacking. Consequently, SCD is associated with high mortality, with under-five mortality ranging from 50-90%.
Some countries are undergoing an epidemiologic transition, whereby, as a result of implementation of widespread
immunization, improved nutrition and antibiotic therapy, increasing number of patients live longer and would
require long-term continuing health care. Thus, health systems in these low-income countries are increasingly
being strained by the demand for limited resources. SCD is emerging as a significant cause of non-communicable
chronic illness in these countries. While the UN resolutions on SCD call for systematic action by Governments,
international partners and donor agencies in combating the disease, these resolutions, to a large measure, are yet
to be translated into action. Better quantification of disease burden, including its incidence, distribution, morbidity
and the causes of mortality are needed for more effective planning and allocation of health care resources.
International donor agencies need to recognize the magnitude of the burden posed by SCD in areas of high disease
burden and put SCD high on their agendas.
Presentations: In this Special Session, Dr. Frederic Piel, of the Spatial Ecology and Epidemiology Group,
University of Oxford will provide information on the use of a novel geo-spatial methodology in determining the
worldwide distribution of the sickle cell gene. Professor Leon Tshilolo from Democratic Republic of Congo and
Professor Dipty Jain, from India, will speak on the disease burden, including morbidity and causes of mortality in
Central Africa and India respectively.
SS7-1: Evidence-Based Map of the Global Distribution of the Sickle Cell Gene.
Frederic B. Piel PhD
SS7-2: Burden of Sickle Cell Disease in Central Africa: Morbidity and Causes of Mortality.
Leon Tshilolo MD
SS7-3: Burden of Sickle Cell Disease in India: Morbidity and Causes of Mortality.
Dipty Jain MD
SS8 Using Rare Disease Consortia to Integrate Health Resources and Services and Research.
Consortia for rare disorders have been formed to bring a collaborative infrastructure for research and the
development of health resources and services information. The consortia model is based on partnerships between
families of individuals with rare disorders or individuals with rare disorders and researchers. One example of this
model is the Rare Diseases Clinical Research Network [RDCRN] supported by Office of Rare Diseases Research
and eight NIH institutes. The RDCRN is made up of 19 distinctive consortia and a Data Management Coordinating
Center (DMCC) that are working in concert to improve availability of rare disease information, treatment, clinical
studies, and general awareness for both patients and the medical community. The RDCRN also aims to provide
up-to-date information for patients and to assist in connecting patients with advocacy groups, expert doctors,
and clinical research opportunities. This session will present an overview of the RDCRN and several rare disease
consortia, such as the Brain Vascular Malformation Consortium (BVMC) which is conducting multi-institutional
studies for Hereditary Hemorrhagic Telangiectasia [HHT], to illustrate these collaborative relationships and the
consortia model. Presenters in this session will provide an overview of the RDCRN consisting of 19 consortia and
DMCC and how these consortia and DMCC are expected to advance the state of clinical knowledge and awareness
of rare diseases, including but not limited to rare blood diseases of interest to the audience. In addition, other
resources available to the rare diseases community will be highlighted. The session will also offer an overview of
the consortia including HHT clinical study and highlight the importance of collaborative efforts of multi-institutions
and Patients Advocacy Groups (PAGs) and will illustrate features of a model consortia and provide practical
information on how a group of investigators at various institutions can successfully conduct multi-institutional
clinical studies in rare diseases and collaborate effectively with various PAGs and pharmaceutical industry.
Presentations:
SS8-1: Rare Diseases Clinical Research Network.
Rashmi Gopal-Srivastava PhD
SS8-2: Brain Vascular Malformation Consortium.

William L. Young MD
SS8-3: HHT Project.

Marie E. Faughnan MD
SS9 Transition Issues

SS9-1: Transition For Adolescents And Young Adults With Sickle Cell Disease: Key Challenges And
Concerns.
Joseph Telfair DrPH, MSW, MPH
Transition of health care to adulthood is the most challenging time for the adolescents with sickle cell disease
(SCD). There comes a time, although not well defined but usually between the ages of 13 to 18, when transition to
adult health care becomes primary. Existing evidence have shown that the top issues and concerns of adolescents
with SCD is a lack of information relating to their transition to adult care, fear of leaving the healthcare provider
with whom they were already familiar and fear that adult care providers may not understand their needs. Currently,
however, there are not enough adult hematologist interested in SCD, and as a result, many patients are eventually
seen by a local general practitioners. This is a common problem across the United States with no easy solutions.
One concept is to form systematic, developmentally appropriate and evidenced-based transition programs. These
provide an adequate setting for the development and implementation of the process from a pediatric to adult
care environment. The key to a successful transition effort is to engage in intervention activities that involve
understanding and meeting the needs of all in the medical ecology of the adolescent/young adult (parent, family,
multidisciplinary providers and other service providers), strengthening the client-family-provider relationship and
improvements in the health care delivery system.
SS9-2: The Bleeding Disorders Transition Program of Children’s Memorial Hospital (CMH): A Process
Evaluation.
Faith V. Gately MS; Susan Gamerman MS, PNP-BC; Elizabeth Fung PhD, LCSW; Kristin Clemenz MS, CGC; Rukhmi Bhat MD; Nichole
Hroma BS, PT; Anjali A. Sharathkumar MD, MS
Objective: CMH hemophilia treatment center is in the process of refining the Transition Program for young
adults with bleeding disorders (time period: December 2011- July 2011) The objective is to facilitate a smooth
and successful transition of young adults with bleeding disorders from pediatric specialty care to an adult medical
facility.
Methods: Survey methodology was adopted to evaluate the barriers of successful transition by interviewing
previously transitioned patients (≥ 20 years) and active patients (ages ≥13 years). Standardized questionnaires
were used to evaluate following domains: knowledge base about the disease, health-care coverage, and motivation
to share responsibility of the disease. Areas of weakness were addressed in subsequent clinic visits by direct
education during clinic visit and providing written materials. Positive reinforcement was given after achievement
of new milestones in accepting disease responsibility. Additionally a career workshop was conducted to provide an
overview of career opportunities that take into consideration the impact of the bleeding disorder.
Results: During this 6-months period a total of 48 surveys were conducted. Seventeen of these were previously
transitioned young adults while 31 were current patients. Among 17 transitioned patients, 4 unsuccessful
transitions were discovered (3/4 with insurance issues, 1/4 lack of comfort with adult facility), two of whom have
now made contact with adult providers with the help of the team. Age distribution of 31 active patients was as
follows: 9 (ages 13-15 years), 24 (ages:16-22 years). Their disease distribution was as follows: hemophilia 27/31,
von Willebrand disease 3/31, Glanzmann’s thrombasthenia 1/31. Results show varying knowledge levels as follows:
satisfactory awareness of diagnosis in 97% (30/31), satisfactory understanding of disease inheritance 67% (21/31).
In the domain of taking disease responsibility, only 29% (11/31) of patients were ready to share their disease
responsibility. Twelve (50%) patients from older age had inadequate knowledge of health-care coverage.
Conclusion: In summary, efforts need to be invested in creating awareness about health care coverage and ensuring
that young adults with hemophilia have health care coverage prior to adult transition. The majority of young
patients with hemophilia lack the motivation to share the disease responsibility despite adequate understanding of
the disease. Barriers of transition include overprotective attitude by families. HTC staff will focus on collaborative
efforts with patients and families so that they learn to share their disease management. Interim process evaluation of
transitional program is helpful to refine and improve the quality-care of young adults with hemophilia.
SS9-3: Development and Implementation of a Transition Timeline for Pediatric Patients with
Thalassemia.
Melina Cheong RN(EC), MN; Geradline Cullen-Dean RN, MN
Background: The life expectancy of patients diagnosed with Thalassemia has drastically increased over the last
decade due to newborn screening, improved management and patient education. This phenomenon has led to an
unprecedented number of patients with Thalassemia entering the adult health care system, thus necessitating
pediatric health clinics to develop and implement resources to facilitate the transition of patients with Thalassemia
from pediatric to adult health care.
The transition timeline is a written resource which meets this need. Therefore, based on an increasing need for
transition resources for pediatric patients with Thalassemia and previous success with the timeline resource, a
Thalassemia specific timeline was developed and implemented.
Purpose: Change is a continuous process that children and families go through over time as development
ensues. An early start to developing skills through a child’s time within the health care system is imperative
to the transition process. By developing and implementing a transition timeline, a written resource describing
a developmentally appropriate continuum towards increased self-management for pediatric patients with
Thalassemia at SickKids was established.
Methods: Development – an existing timeline template was modified to include content specific to Thalassemia,
based on the shared management model. The shared management model is a model that incorporates the
patient or family member to take responsibility for particular aspects of their care. Modifications were finalized
in collaboration with the Thalassemia health care team and the Good 2 Go program; an inter-professional team
offering transition-related education, support and resources to clinical programs. Implementation – Dissemination
of the timeline was guided by Good 2 Go timeline implementation guidelines, and collaboration with the
Thalassemia nurse practitioner, clinic nurses and clinic physician. Development of the timeline was explained to
parents and patients at clinic visits. Families were encouraged to read through the timeline together and complete
the online survey. Younger families were encouraged to keep the timeline for future reference as their children
grew older and moved through the different domains outlined.
Outcomes: The Thalassemia timeline was developed over six months and included parental and adolescent
focused strategies for increased patient self-management within five domains entitled: medical, education, self-
care, social and general. Timeline implementation began June 2011. Timelines were distributed to patients and
families during regularly scheduled clinic appointments by a nurse or physician who briefly discussed the timeline’s
purpose and usefulness with patients and families. Age was not a limiting factor as families with younger (i.e.,
newborn) and older children (up to 18 years old) were given a timeline. Overall, patients and families expressed
positive opinions about the timeline and indicated that they would refer to it in the future. Staff within the
Thalassemia Health care team (i.e., nurse practitioner, clinic nurses, and physician) was enthusiastic about
implementing the timeline and incorporating the timeline in both their practice during patient appointments.
Uptake of the timeline into clinical practice was facilitated by the Good 2 Go team and their expertise in transition
and previous experience with development and implementation of timelines.
Conclusions/Implications: Nurse –led implementation of this transition resource is expected to improve patient
self-management skills, and thereby facilitate the transition of adolescent patients with Thalassemia into adult
health care. Online evaluation of the perceived helpfulness of the timeline is currently underway.
SS10 Sickle Cell Carrier Screening Programs and Clinical Implications

Background: In August 2010 the National Collegiate Athletic Association (NCAA) launched a mandatory sickle
cell trait (SCT) screening program for student athletes. All Division I athletes are required to be screened, provide
newborn screening results from their physician, or sign a written release to decline screening. This is the largest
targeted sickle cell carrier screening program in the United States. It is reported that NCAA Divisions II and III are
in the process of adopting similar screening policies. More than 430,000 student athletes ultimately will be involved
in this genetic screening program. Despite the magnitude and potential impact of these programs, there has been
no comprehensive assessment of the quality of the evidence of the association between SCT and clinical outcomes.
In addition to the lack of a comprehensive review of scientific evidence, the public health ethical implications and
how they are being addressed within the structures of these programs have not been fully addressed. The historical
legacies of previous sickle cell trait and disease screening programs provide a context and lessons learned as these
carrier screening programs are implemented.
Objectives: To report findings from a systematic qualitative review of the scientific and clinical literature of the
clinical complications of sickle cell trait and to explore the use of a framework for public health ethics analysis that
can help identify data needs and the ethical implications of programs and policies designed to address the public
health implications of sickle cell trait. To report clinical experiences and how they can provide insight into further
development of targeted screening programs.
Conclusions and implications for public health practice: Current mass targeted sickle cell screening
programs are a natural experiment for public health research and policy development. Exploring the clinical and
ethical implications and current scientific knowledge is necessary to inform current and future targeted sickle cell
carrier screening policies.
Presentations:
SS10-1: A Systematic Review of Clinical Implications of Sickle Cell Carrier Status.

Vence Bonham JD.
Dr. Bonham will present the current findings of the systematic literature review of the clinical complications of
sickle cell trait as the study's lead investigator.
SS10-2: Sickle Cell Carrier Screening Programs and Clinical Implications.

Kathryn Hassell MD.
Dr. Hassell will present observational and clinical perspective on the clinical complications of sickle cell trait.
SS10-3: Social and Ethical Aspects of Sickle Cell Trait Screening Programs.
Carlton Haywood Jr. PhD, MA.
Dr. Haywood will discuss the social and ethical aspects and impact of screening programs and present a framework
for public health ethics analysis.
SS11 Comprehensive Care for Sickle Cell Immigrant Patients in Europe

Background: In many countries Sickle Cell Disease (SCD) affects people belonging to minority communities,
such as African Americans in the USA or African immigrants in Europe. Immigrants present cultural, social and
financial barriers in accessing the health system and these factors have an effect on the management of chronic
illness. In fact, even though comprehensive medical care has been shown to decrease morbidity, mortality, and
health care resource utilization for patients with SCD, only 36% of SCD children perform at least one hematology
visit per year for comprehensive care in the USA and less than 50% are enrolled in Transcranial Doppler (TCD)
screening programs for stroke prevention both in Europe and the USA. New models of comprehensive care need
to be developed in order to ensure that all SCD patients receive high quality care and benefit from the advances
in clinical research, overcoming patient-related and health system-related barriers to specialized health care. Italy
does not have a hemoglobinopathy newborn screening program; and for many years pediatric hematology services
have focused mainly on Thalassemia. SCD has emerged as an important health condition in Italy in the last decade
due to immigration, mainly from Africa and Albania and the number of affected children is steadily increasing. SCD
is considered a rare disease and, according to the Italian legislation, patients and families can apply for disability
benefits. Children usually refer to their pediatric general practitioner for routine primary care, to local hospitals for
emergencies and to tertiary care reference centers for specialized care.
Objectives: To create a model of specialized comprehensive care in a tertiary care university hospital considering
the specific needs of immigrant patients with SCD. To evaluate adherence to comprehensive care after five years.
Methods: Linguistic, cultural and social issues were considered in organizing comprehensive care for SCD children
at the Clinic of Pediatric Hematology-Oncology of the Azienda Ospedaliera-Università di Padova in 2006. Hospital’s
records and the Sickle Cell Database were used to determine patient’s access to care and modality of access from
2006 to 2010.
Results: Comprehensive care characteristics: Since 2006 a SCD Group was created at the Clinic of Pediatrc
Hematology-Oncology to organize SCD comprehensive care. Multi-disciplinary meetings with pediatric general
practitioners and pediatricians from local hospitals were performed to describe the groups’ activity and the
opportunity to refer children for diagnosis and specialized care. Since 2006, two pediatric haematologists
performed a one-stop weekly SCD clinic within the Pediatric Hematology-Oncology Day-Hospital. Visits were
performed in Italian, English or French to reduce language barrier. A three-language, image-rich, educational
book on SCD (including a pain diary) was given to families at diagnosis and explanations repeated at every
control/visit. Health education is performed at each visit on pain and fever management by a trained nurse (in
Italian, English or French), and on the need for vaccinations and TCD screening by the physician. Social support
- aid in making requests for disability benefits, to obtain or renew permit of stay and to establish links to social
services- was routinely offered. Multidisciplinary visits (including TCD, done by trained technicians that had
achieved certificated competency) were performed within the same clinic and on the same day of hematology
control. To perform a complete annual follow-up for organ damage, sometimes two appointments were required
and therefore, MRI/MRAs,when needed, were performed on Saturdays to facilitate the families. Assistance via
telephone is available to patients 24h/day by the same two pediatric hematologists that were responsible for care
of the children. For emergencies, patients were referred to Padova’s Pediatric Emergency Department (ED) if they
lived in Padova or to their nearest local Hospital’s ED, however, clinical management was always supervised by the
SCD Group through telephone consultation 24hours/day. Patients received a telephone call the week before their
appointment and were reminded to bring their educational book (and pain diary); a letter was sent to the pediatric
general practitioner every fall to remind of the need for flu vaccination.
Population Characteristics: Since 2006, 192 children were referred to the SCD Group for clinical suspicion
of SCD by pediatric general practitioners or ED personnel. 112 (64%) received a confirmed diagnosis of SCD.
SCD patients enrolled in comprehensive care increased from 29 in 2006 to 112 in 2010. 94% are first generation
immigrants (81% African, 45% Nigerians, 15% Ghanaians). 30% live in Padova, 70% in other cities (>40 km) within
the same Region. Mean age at diagnosis was 22 months.
Adherence Evaluation: From 2006 to 2010 both annual outpatient follow-up visits and day hospital appointments
for chronic transfusion increased from 4 to 660 and from 5 to 60, respectively. Since 2007, all children were seen
at least once a year, with 99% adherence to follow-up appointments and 100% to appointments including TCD.
Both ED access/patient/year and inpatient admissions/patient/year decreased from 2007 to 2010: from 2,3 to 0,98
(mainly due to home-management of pain crisis) and from 0,30 to 0,25, respectively (p<0.001). Coverage increased
from 26% to 97% for annual flu vaccination and from 80% to 92% for pneumococcus vaccination. All families
accepted Hydroxycarbamide (20), chronic transfusion or red cell apheresis (20) and bone marrow transplantation
(4) when offered for clinical reasons.
Conclusion and implications for public health practice: Immigrant patients display language, social and
financial barriers that can limit access to health care, routine care and assistance for emergencies. Our experience
demonstrates that addressing linguistic, cultural and social issues aids families in increasing adherence to
comprehensive multidisciplinary care and ensures that all patients receive the minimal standards of care for SCD
(TCD, vaccinations and prescription for amoxicillin). Creating a network with pediatric general practitioners and
local hospital’s pediatricians through telephone calls and letters supports families and contributes to adherence.
Compliance to hydroxycarbamide therapy and amoxicillin prophylaxis at home or quality of care and TCD could
not be evaluated in our study and needs other pathways of control.
Presentations:
SS11-1: Comprehensive Care for Sickle Cell Immigrant Patients in Italy: a Reproducible Model
Achieving High Adherence.
Raffaella Colombatti
SS11-2: The Challenges of the Management of Sickle Cell Disease Children in France.
Mariane de Mantalembert
SS11-3: Sickle Cell Disease, Lessons From the Belgian Cohort.

Béatrice Gulbis; Phu Quoc Lê
SS12: Promoting Partnerships Between Community-Based Organizations and

Health Care Providers to Address Specific Health Problems
SS12-1: Effective Partnering in North Carolina.

Sue Fletcher PhD; Steven Humes MM, MPH
Background: The number of patients with bleeding disorders cared for in the U.S. has grown steadily in recent
decades. In 1990, over 17,000 persons were seen in federally funded treatment centers (Minimal Data Set for Risk
Reduction). By 2010, outreach efforts to identify women with bleeding disorders and those with von Willebrand
disease resulted in nearly doubled enrollment numbers (Hemophilia Data Set 2010). Also, the physical and
mental health concerns of patients have evolved over the past 20 years. In an era of shrinking federal dollars
and hemophilia treatment center (HTC) staff with expanded caseloads and job requirements, meeting the total
needs of clients is a challenge. In the 1980s and 1990s roughly half the bleeding disorders community became
infected with HIV, but improvements in the management of the illness and in hemophilia therapies have resulted
in longer life spans for both HIV-positive and HIV–negative individuals, leading to an aging population dealing
with multiple co-morbidities. Little is known about the psychosocial needs of this population. Also, the bleeding
disorder population has met significant challenges in obtaining consistent, quality dental care due to the lack
of dental providers' knowledge about bleeding disorders and their inexperience in treating affected individuals.
The 130 HTCs have historically turned to community-based organizations, or CBOs (primarily the 45 National
Hemophilia Foundation [NHF] chapters) as partners in providing educational programming, conducting legislative
advocacy campaigns, and offering psychosocial support to their patients. Also, chapters have the capacity to reach
individuals who are not active patients of HTCs. Chapter and HTC size, capacity and staffing may vary, but centers
and, ultimately, patients may benefit in a multitude of ways from coordinated efforts. Consequently, two HTC/CBO
collaborations in North Carolina (NC) and Florida (FL) were launched to address the separate issues of health-
related qualify of life among older men with hemophilia and dental care for those with bleeding disorders.
Objectives: The objective of the session is to describe the development and maintenance of the NC and FL
CBO/HTC collaborations as paradigms for building effective partnerships to address unmet needs in the context
of limited time and resources. The rationale for and synergistic effects of each relationship will be explored.
Presenters will describe key elements to ensure effective partnerships and obstacles to avoid in fostering these
relationships. Participants will learn about successful programs, how resources are maximized, what organizational
structures support the projects, and how patients benefit. The NC project, for example, demonstrates how
understanding of the target population and its needs can improve through HTC/CBO collaboration and is
illustrative of effective community-based participatory research.
Methods: The presentation will describe local and regional projects, showcasing effective collaboration between
CBOs and HTCs while delineating some of the challenges and tensions encountered in developing mutually
beneficial relationships. The NC project is an innovative, two-year research project launched in the summer of
2011 to assess quality of life in a cohort of individuals with bleeding disorders over the age of 50 and their partners.
The study is being jointly conducted by staff members of the NC NHF chapter, Hemophilia of North Carolina
(HNC), and the HTC at UNC-Chapel Hill. The principal investigator is a PhD social worker employed by HNC;
other members of the research team include a hematologist at UNC-CH and a physical therapist who is a research
fellow at the UNC-CH Institute on Aging. The Florida dental care collaboration began formally in June 2010. At
that time, the Hemophilia Foundation of Greater Florida (HFGF), a FL chapter of the NHF, partnered with the
University of Miami HTC social worker to delineate available dental resources in Florida. The team developed a
tri-fold dental resource guide that provides information on not only specialty university dental clinics available for
those with bleeding disorders, but also the Florida Association of Community Health Centers and the state's oral
health resource guide, SmileFlorida.org. Further, the HFGF leadership continued its outreach efforts by obtaining
a grant to participate in dental conferences throughout FL in order to provide bleeding disorder education directly
to many dentists and hygienists.
Results: Both the NC and FL projects demonstrate how limited resources—such as staffing, expertise, and/
or funding—can be overcome through the collaborative efforts of CBOs and HTCs. In fact, the objectives for
each project could not have been achieved without the combined efforts of the two entities working together in
each state. In NC, clinical staff at the HTC did not have time to oversee and execute such an ambitious research
project, while the smaller staff at the NHF chapter lacked the ability to 1) recruit study subjects through specific
HTCs in the Southeast and 2) conduct the qualitative analysis. Key elements in the successful development
and maintenance of the NC relationship have included strong executive leadership at the NHF chapter, monthly
research team meetings, frequent email contact among team members, and clear assignment of responsibility for
specific tasks. The FL partnership has resulted in notable achievements, including the distribution of 500 booklets,
pamphlets and other educational materials about bleeding disorders; an article about dental care for bleeding
disorder patients posted on a dental website; the development and distribution of the consumer resource brochure;
a list maintained by HFGF of dentists and oral surgeons who are trained and willing to treat patients with bleeding
disorders; and open communication with the two dental schools in FL to determine how they are currently able to
meet the needs of those with bleeding disorders.
Conclusion and implications for public health practice: The development and maintenance of provider and
chapter relationships are both time- and cost-effective. Further, enhanced collaboration between CBOs and HTCs
promotes better understanding of the patient population, smoother continuity of care for shared patients, and
better health outcomes for patients.
SS12-2: Chapter Collaboration with Florida Hemophilia Treatment Centers.

Fran Haynes BA
Background: The number of patients with bleeding disorders cared for in the U.S. has grown steadily in recent
decades. In 1990, over 17,000 persons were seen in federally funded treatment centers (Minimal Data Set for Risk
Reduction). By 2010, outreach efforts to identify women with bleeding disorders and those with von Willebrand
disease resulted in nearly doubled enrollment numbers (Hemophilia Data Set 2010). Also, the physical and
mental health concerns of patients have evolved over the past 20 years. In an era of shrinking federal dollars
and hemophilia treatment center (HTC) staff with expanded caseloads and job requirements, meeting the total
needs of clients is a challenge. In the 1980s and 1990s roughly half the bleeding disorders community became
infected with HIV, but improvements in the management of the illness and in hemophilia therapies have resulted
in longer life spans for both HIV-positive and HIV–negative individuals, leading to an aging population dealing
with multiple co-morbidities. Little is known about the psychosocial needs of this population. Also, the bleeding
disorder population has met significant challenges in obtaining consistent, quality dental care due to the lack
of dental providers' knowledge about bleeding disorders and their inexperience in treating affected individuals.
The 130 HTCs have historically turned to community-based organizations, or CBOs (primarily the 45 National
Hemophilia Foundation [NHF] chapters) as partners in providing educational programming, conducting legislative
advocacy campaigns, and offering psychosocial support to their patients. Also, chapters have the capacity to reach
individuals who are not active patients of HTCs. Chapter and HTC size, capacity and staffing may vary, but centers
and, ultimately, patients may benefit in a multitude of ways from coordinated efforts. Consequently, two HTC/CBO
collaborations in North Carolina (NC) and Florida (FL) were launched to address the separate issues of health-
related qualify of life among older men with hemophilia and dental care for those with bleeding disorders.
Objectives: The objective of the session is to describe the development and maintenance of the NC and FL
CBO/HTC collaborations as paradigms for building effective partnerships to address unmet needs in the context
of limited time and resources. The rationale for and synergistic effects of each relationship will be explored.
Presenters will describe key elements to ensure effective partnerships and obstacles to avoid in fostering these
relationships. Participants will learn about successful programs, how resources are maximized, what organizational
structures support the projects, and how patients benefit. The NC project, for example, demonstrates how
understanding of the target population and its needs can improve through HTC/CBO collaboration and is
illustrative of effective community-based participatory research.
Methods: The presentation will describe local and regional projects, showcasing effective collaboration between
CBOs and HTCs while delineating some of the challenges and tensions encountered in developing mutually
beneficial relationships. The NC project is an innovative, two-year research project launched in the summer of
2011 to assess quality of life in a cohort of individuals with bleeding disorders over the age of 50 and their partners.
The study is being jointly conducted by staff members of the NC NHF chapter, Hemophilia of North Carolina
(HNC), and the HTC at UNC-Chapel Hill. The principal investigator is a PhD social worker employed by HNC;
other members of the research team include a hematologist at UNC-CH and a physical therapist who is a research
fellow at the UNC-CH Institute on Aging. The Florida dental care collaboration began formally in June 2010. At
that time, the Hemophilia Foundation of Greater Florida (HFGF), a FL chapter of the NHF, partnered with the
University of Miami HTC social worker to delineate available dental resources in Florida. The team developed a
tri-fold dental resource guide that provides information on not only specialty university dental clinics available for
those with bleeding disorders, but also the Florida Association of Community Health Centers and the state's oral
health resource guide, SmileFlorida.org. Further, the HFGF leadership continued its outreach efforts by obtaining a
grant to participate in dental conferences throughout FL in order to provide bleeding disorder education directly to
many dentists and hygienists.
Results: Both the NC and FL projects demonstrate how limited resources—such as staffing, expertise, and/
or funding—can be overcome through the collaborative efforts of CBOs and HTCs. In fact, the objectives for
each project could not have been achieved without the combined efforts of the two entities working together in
each state. In NC, clinical staff at the HTC did not have time to oversee and execute such an ambitious research
project, while the smaller staff at the NHF chapter lacked the ability to 1) recruit study subjects through specific
HTCs in the Southeast and 2) conduct the qualitative analysis. Key elements in the successful development and
maintenance of the NC relationship have included strong executive leadership at the NHF chapter, monthly
research team meetings, frequent email contact among team members, and clear assignment of responsibility for
specific tasks. The FL partnership has resulted in notable achievements, including the distribution of 500 booklets,
pamphlets and other educational materials about bleeding disorders; an article about dental care for bleeding
disorder patients posted on a dental website; the development and distribution of the consumer resource brochure;
a list maintained by HFGF of dentists and oral surgeons who are trained and willing to treat patients with bleeding
disorders; and open communication with the two dental schools in FL to determine how they are currently able to
meet the needs of those with bleeding disorders.
Conclusion and implications for public health practice: The development and maintenance of provider and
chapter relationships are both time- and cost-effective. Further, enhanced collaboration between CBOs and HTCs
promotes better understanding of the patient population, smoother continuity of care for shared patients, and
better health outcomes for patients.
SS12-3: RuSH Health Promotion Strategies From the Field.

Melissa Creary MPH; Mary Hulihan MPH; Shammara Pope MPH; RuSH Sites in California Department of Public Health, Florida
Department of Health, Georgia Department of Public Health, Michigan Department of Community Health, New York State
Department of Public Health, North Carolina Division of Public Health, Pennsylvania Department of Health
Background: RuSH is a seven state two year pilot program that aims to systematically collect surveillance data in
seven states on sickle cell disease and thalassemia. A document entitled “Rush Strategies from the Field—Health
Promotion” is being produced to highlight the unique implementation of activities created to assist in the meeting
of RuSH programmatic goals. Ultimately this document will inform and motivate appropriate leaders to create a
supportive environment for the program by taking actions such as: changing policies, allocating resources, speaking
out on critical issues, and initiating public discussion. This presentation will examine the showcased activities from
each state in the strategies document.
Objectives: The objective of this presentation is to discuss and compare the strategies employed by RuSH states
to help promote RuSH, sickle cell disease, and thalassemia within their respective states.
Methods: The information needed to produce the strategies document will have been collected from reports
submitted to the CDC as well as from semi-structured key informant interviews with program staff in each RuSH
funded state. Each state will have worked with CDC to create their segment that will include the following:
program overview, resources needed, benefits, outcomes, lessons learned, and next steps. In addition to
programmatic description, each state will provide information about dissemination and uptake patterns.
Results: N/A
Conclusion and implications for public health practice: The byproduct of RuSH includes not only important
surveillance data to help assess the number of people living with a hemoglobinopathy across the nation, but also
the implementation of important practices within states to help increase awareness and education about sickle cell
disease and thalassemia. The finalized strategies document will highlight practices in the participating states as
well as produce replicable methods to other states.
SS13 Basic Principles of Consent in Research, Surveillance and Patient Care

SS13-1: Essentials of Consent and Informed Decision.

Scott Campbell MSPH
While some may believe that the horrendous human experimentation committed by the Nazis during the second
World War and the resulting Nuremberg Trials were the main impetus for the formulation of the rights of human
subjects, others may not be fully aware of the atrocities committed during the human eugenics program conducted
in the United States from the early 1900s up until the 1970s and the horrors committed in Tuskegee, Alabama
among African-American men from 1932 to 1972. These events will be reviewed and described as to how they
contributed to the formulation of a U.S. Code of Federal Regulations in 1974 regarding the protection of human
subjects. The principles of the 1976 Belmont Report that resulted from the regulations will be described which
provides the current foundation for informed consent in the United States. An overview of further examples of past
and continuing lapses in the protection of human subjects that have recently come to light (such as Guatemala STD
experiments performed from 1946 to 1948 with U.S. Funding) will underscore the need for continuing vigilance
as to the rights and welfare of human subject research. Finally, a review will be provided of the Advance Notice
of Proposed Rulemaking (ANPRM) within the Federal Register in July 2011 which was published by The Office of
the Secretary of the Department of Health and Human Services (HHS) in coordination with the Office of Science
and Technology Policy (OSTP) to request comment on how current regulations for protecting human subjects who
participate in research might be modernized and revised to be more effective. The proposed changes are designed
to strengthen protections for human research subjects; these potential changes will be reviewed and discussed.
SS13-2: Informed Consent for Persons with Hemophilia.

Corey Dubin
Persons in the hemophilia community who were infected with HIV and hepatitis C when these were found to
be contaminants in the US blood supply were given little or no advance information from which to make an
informed decision regarding choice of medications. As with many within and outside this group, when HIV tests
were given, a huge and inappropriate proportion of such procedures was kept secret from the patient, as were
the results. As the morbidities and mortality from the hemophilia infections continue today, thirty years later,
it should come as no surprise to medical practitioners and policymakers that this group, including the affected
as well as the infected, has become and remains highly distrustful of medicine in general with regard to such
matters. This session will provide documentation on the events described above, and will provide an overview of
some of the key subcategories which should be of interest to all providers: how risks and benefits are portrayed
in advance to the patient, how their history has traumatized this group every bit as much as more conventionally
recognized military service has others in the US, and how these experiences contribute to depression and affect
adherence. The severity of the consequences of improperly administered (or NOT administered) informed consent
cannot be ignored. The Institute of Medicine's report on the HIV contamination contained a valuable series of
recommendations. Some have been enacted; another, calling for a widespread change of practice, has not: "When
faced with a decision in which all options carry risk, especially if the amount of risk is uncertain, physicians and
patients should take extra care to discuss a wide range of options. "Informed consent is thus an ongoing matter.
"All recombinant factor is safe" may be a blanket statement heard these days by proponents of these products;
it informs not at all as to dosing and issues and emerging trends concerning inhibitor formation. At the core of
informed consent is the question of the trust of those treated in the medical profession, and physicians who are
delivering treatment and care. Medical betrayal is also a common theme that has been communicated individually
to our National Advocate, at town meetings and on numerous conference calls. This trauma we have found to
be operative, especially in the survivors and their families. This furthers the isolation and alienation from the
Hemophilia Treatment Centers (HTCs) in what is already a major sector of the hemophilia community. As the
AIDS/blood and HCV epidemics move farther into history we have seen this marked increase in individuals' sense
of isolation and alienation from the larger hemophilia community. These individuals perceive the majority, those
seeking care regularly at HTCs, as uneducated regarding the devastation that occurred across the hemophilia
community in the 1980s and 1990s.It is more important than ever that providers seek a better understanding of
the underlying mechanisms of complications and the potential opportunities for the intervention and prevention of
PTSD, trauma and depression to reduce the consequences or impact of complications.
SS14 Females with Bleeding Disorders: Role of Primary Care

SS14-1: Community Health Centers: Improving Access to Care and Reducing Health Disparities.
A.Seiji Hayashi MD, MPH, FAAFP
This session will review HRSA’s Health Center Program and its quality improvement strategy. It will also describe
the program’s successes in improving access to care and reducing health disparities. Finally, the speaker will
present opportunities for collaboration and partnership as it relates to caring for women with bleeding disorders.
SS14-2: The Past, Present and Future of Care and Research in Women with Bleeding Disorders.
Peter Kouides, MD
Historically, the pathogenesis of heavy menstrual bleeding (HMB) has focused on anatomic and hormonal etiologies.
However, in the past decade, numerous epidemiological studies have confirmed an association of von Willebrand
factor (VWF) deficiency and HMB with a prevalence of VWF deficiency of 13% (95% C.I. 11%, 16%). Such
patients have a reduced quality of life and incur a high rate of seemingly unnecessary gynecological interventions.
In addition, it appears that platelet function abnormalities are ~3-4 fold more common than VWF deficiency in
association with HMB. The management of HMB with an underlying disorder of hemostasis involves consideration
of the patient’s age, childbearing status and preference in terms of several options: hemostatic (oral tranexamic
acid, intranasal desmopressin), hormonal (oral contraceptive, levonorgestrel intrauterine system) and surgical
(endometrial ablation, hysterectomy). Comparative trials in bleeding disorder-related menorrhagia of intranasal
DDAVP and tranexamic acid have been carried out as has study of the levonorgestrel intrauterine device; a future
option may be interleukin-11. Regarding the pregnant patient with an underlying disorder of hemostasis, despite
the well-known adage of the “gestational palliation” of VWD, there is a high proportion of post-partum hemorrhage
(PPH) in Type 1 patients also especially after the first twenty fours after delivery. This may occur despite
normalization of the Factor VIIIc level in the third trimester particularly in Type 2,3 patients. The caregiver must be
aware that hemorrhage can occur up to 4 weeks post-partum. In sum, studies in the past decade have documented
a substantial impact of menses and childbirth in women with an underlying disorder of hemostasis. It is imperative
to establish algorithms of effective interventions for HMB and PPH associated with an underlying disorder of
hemostasis in order to justify wide-spread hemostasis screening of the patient with HMB and/or PPH and to develop
effective outreach and delivery of care across the disciplines of primary care, gynecology care and hematological
expertise within the Hemophilia Treatment Center network. Such multidisciplinary care and research will hopefully
reduce the obstetrical and gynecological morbidity in women with an underlying disorder of hemostasis.
SS14-3: The Value of Integrated Primary-specialty Care in Women with Bleeding Disorders.
Christopher Stille MD, MPH
Recent research has shown that minor bleeding disorders are remarkably common among women with symptoms
of heavy menstrual bleeding. These can often be diagnosed and managed without significant gynecological
intervention. This is just one example of recent discoveries that highlight the potential role of primary care
clinicians in the diagnosis and management of conditions that traditionally are referred to medical and surgical
subspecialists.
The Medical Home concept, originally conceptualized as a best practice model for children and youth with
special health care needs, has recently been operationalized for all children and adults. This model emphasizes
partnerships between primary care and specialty clinicians as well as support staff, family and community
resources. This presentation will use cases related to the management of minor bleeding disorders in women
to illustrate the potential for integrated primary and specialty care in streamlining and improving care through
improved education and negotiated collaboration between clinicians.
SS15 Telemedicine and Telehealth: Innovative Tools for Addressing

Public Health Challenges and Access to Care
Telemedicine, the use of communication technologies to provide health care services, is uniquely poised to help
address the current challenges of access and outcomes inherent in today’s healthcare environment. Telemedicine
has been in use for half a century, in which researchers have explored the different technologies utilized, clinical
outcomes, cost benefits, perceptions, and challenges of its use. This presentation will overview the evolution
of telemedicine technologies, explore research findings to date, and present current innovative applications.
Discussion of new applications will focus on emerging methods of improving adherence and commitment to health
goals by drawing upon technologies that are highly integrated into individuals' lives, such as social media and
mobile apps. Finally, a report of the ongoing challenges regarding adoption and implementation will focus on the
outstanding work required to make these technologies more user-friendly, to lower costs, and to assist healthcare
practitioners in integrating them into their practices.
SS15-1: Telemedicine and Telehealth: Innovative Tools for Addressing Public Health Challenges
and Access to Care.
Pamela Whitten, PhD
SS15-2: Telehematology and Telehemophilia From the Trenches — a Practical Approach.

Roshni Kulkarni, MD
Day 3, Wednesday March 14, 2012

8:00 AM - 9:30 AM Plenary III: Blood Disorders In Women:
Challenges Across The Lifespan
The session will include a brief introduction to frame life course perspective as it relates to women and blood
disorders including bleeding and clotting disorders, and hemoglobinopathies. Commonalities across disorders will
be highlighted, priorities will be identified, and strategies will be proposed to address those priorities, especially
strategies that cut across disorders and help to reduce disorder silos. Speakers will describe the burden of disease
across life stages/age groups, identify challenges in treatment and management, and describe complications of
pregnancy and childbirth.
Presentations:
• Bleeding Disorders. Ruth Ann Kirschman WHNP-BC, MS
• Clotting Disorders. Stephan Moll MD
• Hemoglobinopathies. Lanetta Jordan MD
10:00 AM – 11:30 AM Closing Plenary The Future of the Blood Disorders Workforce
Speakers will describe the historical and present challenges that contribute(d) to workforce shortages and under-
trained workforce and will identify barriers to attracting new persons to the workforce and describe evidence-
based and evidence-informed methods of overcoming these barriers. Panelists will describe initiatives of respective
organizations that are on-going or being implemented to address barriers/challenges; describe recruitment and
retention efforts of respective organizations in securing the future of blood disorder workforce; discuss efforts
to support training programs and help train new workers in blood disorders and adapt their new careers to
challenges in the field; and, appraise current workforce issues including: competency standards, advocacy, training
opportunities, reimbursement and other financial barriers, and transitions. Ms. Judith Baker will discuss the role
of non-physicians and will describe the potential and opportunities for expanding multi-disciplinary team roles;
the process involved in developing multi-disciplinary collaborative teams; and training opportunities and retention
efforts to keep non-physician staff from leaving the field.
Perspectives from:
The American Society of Hematology.

Lawrence A. Solberg, Jr. MD, PhD
The American Society of Pediatric Hematology/Oncology.

George Buchanan MD
The National Heart, Lung and Blood Institute.

Donna DiMichele MD
Non-physician Workforce.
Judith Baker MHSA
UPCOMING CONFERENCE PREVIEW
Upcoming Conference Preview
Day 4, Thursday, March 15, 2012

The Conference of the Global Sickle Cell Disease Network
The Global Sickle Cell Disease Network (GSCDN) is a dynamic association of SCD clinicians and researchers
from the North and South working together to establish clear evidence about the scope of the problem of SCD;
determine the most effective ways to treat SCD, especially in low-income settings; and establish clinical and
research coordinating care centres within Africa that will lead to effective, lasting change in the diagnosis and
treatment of SCD. Plenary sessions will feature expert researchers and clinicians discussing:
• Progress and next steps for GSCDN
• Visions and plans for partnerships with international agencies
• Regional networks and their potential impact
• Models of international partnership yielding real results in Africa
In addition, there will be 12 platform and more than 40 poster presentations of original scientific abstracts selected
following an international call. The afternoon of March 15 will be devoted to a workshop wherein specific SCD
issues will be discussed in depth and plans will be made for ongoing collaborations around the following topics:
• Newborn screening and surveillance
• Infections
• Hydroxyurea therapy in low-income regions
• Genetic and environmental factors that govern phenotypic diversity
Day 5, Friday, March 16, 2012

Sickle Cell and Thalassaemia: Global Public Health Issues Come of Age:
In 2010 the First WISSH (World-wide Initiative on the Social Study of Haemoglobinopathies) Inaugural Conference
in the UK marked the 100 years since James Herrick published his observations on what is now known as sickle
cell disease. Sickle cell and thalassaemia are now public health issues of global importance. This Second WISSH
Conference seeks to mark the changing global profile of sickle cell and thalassaemia, with particular emphasis on
social scientific research, on social research relevant to improving services for people with sickle cell/thalassaemia
and on research relevant to global countries of the South. WISSH aims to promote and support high quality social
and inter-disciplinary studies into sickle cell disease and thalassaemia in fulfillment of its mission “to advance social
studies in the service of the sickle cell and thalassaemia global communities.” With papers on the social aspects of
sickle cell and thalassaemia from North and South America, from Europe and from Africa, this conference will be
of interest to social scientists, health professionals working with people with sickle cell/thalassaemia, those working
for sickle cell/thalassaemia non-governmental organizations, as well as those living with sickle cell or thalassaemia.
INDEX OF AUTHORS, COAUTHORS, INVITED SPEAKERS AND MODERATORS
Index of Authors, Coauthors, Invited Speakers, and Moderators
Ashrani, Aneel A. MD, MS Azonobi, Ijeoma MD
A Consultant, Division of EIS Officer, Division of Blood Disorders,
Hematology, Assistant Centers for Disease Control
Adamkiewicz, Thomas MD
Professor of Medicine, 1600 Clifton Road, MS E-64 Atlanta, GA
Assistant Professor, Morehouse School of
Mayo Clinic College of Medicine 30333
Medicine
Phone: 507-284-3158 Phone: 404-498-6459
Phone: 404-756-1230
Email: ashrani.aneel@mayo.edu Email: iba9@cdc.gov
Email: Tadamkiewicz@Msm.edu
Asnani, Monika MBBS, DM
Aggarwal, Pushkar
Sickle Cell Unit, University of the West
2nd Lieutenant Civil Air Patrol,
Indies
B
Pollesville High School
Phone: 876 977 6151-2 Baker, Charlotte PhD
13305 Darnestown Road, Gaithersburg,
Email: monika.parshadasnani@uwimona. Division of Blood Disorders, Centers for
MD 20878
edu.jm Disease Control and Prevention
Phone: 205-266-5234
Email: aggarwal.pushkar@gmail.com 1600 Clifton Road, MS E-64, Atlanta, GA
Atrash, Hani MD, MPH
30333
Director, Division of Blood
Alter, Blanche P. Phone: 404-498-3826
Disorders, Centers for
Cancer Expert, National Institutes of Email: EIY0@cdc.gov
Disease Control and
Health
Prevention Baker, Judith MHSA
Email: alterb@mail.nih.gov
1600 Clifton Road, MS E64 Administrative Director, Federal
Allen, Melanie Kirby Atlanta, GA 30333 Hemophilia Treatment C, Division of
Email: melanie.kirby-allen@sickkids.ca Phone: 404-498-3075 Pediatric Hematology/ Oncology, UCLA,
Email: HKA1@cdc.gov 10833 Le Conte Avenue, Los Angeles, CA
Amaria, Khush PhD, C. Psych 90095-1752
Clinical and Health Psychologist and Atsidaftos, Eva MA
Phone: 310-791-6264
Team Lead, Hospital for Sick Children Clinical Research Associate, Cohen
Email: judithbaker@mednet.ucla.edu
Phone: 416-813-5261 Children's Medical Center of New York/
Email: khush.amaria@sickkids.ca The Feinstein Institute for Medical Barfield, Wanda MD, MPH, FAAP
Research Director, Division of Reproductive
Amendah, Djesika PhD 269-01 76th Ave, New Hyde Park, NY Health, Centers for Disease Control and
Associate Research Scientist, African 11040 Prevention
Population and Health Research Center Phone: 516-562-1504 Phone: 770-488 5417
P. O Box 10787 -00100 GPO, Nairobi, Email: eatsidaft@nshs.edu Email: wjb5@cdc.gov
Kenya
Email: damendah@gmail.com Austin, Harland DSc Barwick, Adeline
Professor, Department of Epidemiology, Chief, Genetic Services, Bureau of
Andersen, Judith MD Emory University Rollins School of Family Health, PA Department of Health
Associate Professor, Department of Public Health 7th Floor East, Health and Welfare
Medicine, Wayne State University 1518 Clifton Rd, Atlanta, GA 30322 Building, Harrisburg, PA 17120
4100 John R/4th Floor, Detroit, MI 48201 Phone: 404-712-2679 Phone: 717-783-8143
Phone: 313-576-8707 Email: haustin@emory.edu Email: abarwick@state.pa.us
Email: andersen@wayne.edu
Avery, Holly PhD, MPH Beach, Mary Catherine MD, MPH
Ansell, Jack MD Associate Project Director, Georgia Associate Professor of Medicine, The
National Blood Clot Alliance Health Policy Center, Andrew Young Johns Hopkins Hospital
120 White Plains Road, Suite 100, School of Policy Studies Email: mcbeach@jhmi.edu
Tarrytown, NY 10591 Phone: 404-413-0291
Phone: 914-220-5040 Email: havey@gsu.edu Bean, Christopher PhD
Email: jansell@lenoxhill.net Research Biologist, Division of Blood
Disorders, Centers for Disease Control
Aschman, Diane Ayeni, Olubukola BS and Prevention
President and CEO, American Medical Student, College of Medicine, 1600 Clifton Road MS D02, Atlanta, GA
Thrombosis and Hemostasis Network Howard University 30333
72 Treasure Lane, Riverwoods, Illinois 520 W Street NW, Washington, DC 20059 Phone: 404-639-0430
60015 Phone: 240-35-0395 Email: est6@cdc.gov
Phone: 847-607-9479 Email: bukky702@yahoo.com
Email: daschman@athn.org
Bean, Lora J. H. PhD, FACMG Phone: 301-594-3973 Brown, Mary

Director, Molecular Genetics Laboratory, Email: bonhamv@mail.nih.gov President & CEO, Sickle Cell Disease
Emory University Foundation of California
615 Michael St. Suite 301, Atlanta, GA Bolen, Julie PhD, MPH 5777 West Century Boulevard, Suite
30022 Team Lead, Division of Human 1230, Los Angeles, CA 90045
Phone: 404-727-0485 (Research) 404- Develpment and Disability, Centers for Phone: 310-693-0247
778-8508 (Clinical) Disease Control and Prevention Email: maryb@scdfc.org
Email: ljbean@emory.edu 1600 Clifton Road, Atlanta, GA 30333
Phone: 404-498-3277 Brownstein, Alan MPH
Beckman, Michele, MPH Email: jcr2@cdc.gov Chief Executive Officer, National Blood
Epidemiologist and Team Lead, Division Clot Alliance, 120 White Plains Road,
of Blood Disorders, Centers for Disease Boudreaux, Jeanne MD Suite 100, Tarrytown, NY 10591
Control and Prevention, 1600 Clifton Pediatric Hematoloy/ Oncology, Phone: 914-220-5040
Road MS E64, Atlanta, GA 30333 Children's Healthcare of Atlanta at Email: abrownstein@stoptheclot.org
Phone: 404-498-6474 Scottish Rite
Email: mbeckman@cdc.gov Phone: 404-785-3240 Bryant, Dana MPH
Email: Jeanne.Boudreaux@choa.org Research Coordinator, National Human
Belvedere, Melissa BSN Genome Research Institute
Children's Hospital of Orange County Boulet, Sheree PhD National Institutes of Health, Building 31
455 South Main Street, Orange, CA Epidemiologist, Division of Blood - Claude D Pepper Building, B1B55, 31
92868 Disorders, Centers for Disease Control Center Dr, Bethesda, MD 20892
Phone: 714-532-8459 1600 Clifton Road, MS D02 Atlanta, GA Phone: 301-451-7653
Email: mbelvedere@choc.org 30329 Email: dana.bryant@nih.gov
Phone: 404-639-4032
Berninger, John W. BS Email: sbu1@cdc.gov Buchanan, George MD
Email: jwb06@health.state.ny.us University of Texas Southwestern
Boylan, Brian MS Children's Cancer Fund Distinguished
Bhat, Rukhmi MD Research Biologist, Division of Blood Chair in Pediatric Oncology and
Children's Memorial Hospital, 2300 Disorders, Centers for Disease Control Hematology Director, Barrett Family
Children's Plaza and Prevention Center for Pediatric Oncology
Box 30, Chicago, IL 60614 1600 Clifton Road, MS D02, Atlanta, GA Email: george.buchanan@
Phone: 773-880-8664 30333 utsouthwestern.edu
Email: rbhat@childrensmemorial.org Phone: 404-718-4031
Email: kio6@cdc.gov Buranahirun, Cathliyn PsyD
Bhatt, Komal MBBS Postdoctoral Psychology/
Sickle Cell Unit, University of the West Boyle, Coleen PhD, MSHyg Neuropsychology Fellow, Children's
Indies, Mona Campus, Kingston 7, Director, National Center on Birth Hospital LA 4650 Sunset Blvd MS 54, Los
Jamaica (W.I.) Defects and Developmental Disabilities, Angeles, CA 90027
Phone: 876 977 6151-2 Centers for Disease Control and Phone: 323-361-8687
Email: komal.bhatt02@uwimona.edu.jm Prevention Email: cburanahirun@chla.usc.edu
1600 Clifton Road, MS D02, Atlanta, GA
Bockenstedt, Paula MD 30333 Burg, Michelle BBA
Clinical Associate Professor, University Phone: 404-498-3800 Programming Director Hemophilia
of Michigan Email: cab3@cdc.gov Federation of America 210 7th St. Se
Director, Adult Coagulation Disorders Ste. 200B Washington, DC 20003
Program Branscomb, Jane MPH Phone: 262-490-2221/1-800-230-9797
1500 East Medical Center Drive Floor Georgia Health Policy Center, Georgia Email: m.burg@hemophiliafed.org
B1, Room B1358, Reception: B, Ann State University
Arbor, MI 48109 Phone: 404-413-0317 Butler, Craig BFA, MA
Phone: 734-647-8921 Email: jane@gsu.edu National Communications Director
Email: pbockens@umich.edu Cooley’s Anemia Foundation
Brown, Lorraine RN, BS, CPHP Phone: 800-522-7222
Bonham, Vence JD Program Director, Hemoglobinopathy Email: c.butler@cooleysanemia.org
Associate Investigator, National Human Programs, HRSA/MCHB/ Genetic
Genome Research Institute Services Branch
Building 31 - Claude D Pepper Building, 5600 Fishers Lane - Rm. 18a-19,
B1B55, 31 Center Dr, Bethesda, MD Rockville, MD 20857
20892 Phone: 301-443-9775
Email: lbrown@hrsa.gov
Byams, Vanessa MPH Chavez, Gilberto MD Comer, Diane BA

Health Scientist, Division of Blood Associate Director and State Data Analyst, Center for Research on
Disorders, Centers for Disease Control Epidemiologist, California Department of Health Care Data Center
and Prevention Health Services 200 Meyran Avenue, Suite 300,
1600 Clifton Road, ,MS 1501 Capitol Avenue, Suite 71, 6101 MS Pittsburgh, PA 15213
E-64, Atlanta, GA 30333 0000, Sacramento, CA 95814 Phone: 412-692-4896
Phone: 404-498-6615 Phone: 916-440-7434 Email: comerdm@upmc.edu
Email: ver0@cdc.gov Email: gchavez1@dhs.ca.gov
Cooke, Brandi BS
Cheong, Melina RN (EC), MN Division of Blood Disorders, Centers for
C Sickle Cell and Thalassemia Program, Disease Control and Prevention
Division of Haematology & Oncology, 1600 Clifton Rd, NE, MS E-64, Atlanta,
Caines, Allyce MA
The Hospital for Sick Children GA 30333
Medical Student, SUNY Upstate Medical
Phone: 416-813-2147 Phone: 404-498-6879
University
Email: melina.cheong@sickkids.ca Email: inm4@cdc.gov
800 Ivy Ridge Road, Apt 31, Syracuse,
NY 13210 Chitlur, Meera MD Crawford, Jennifer MPH
Phone: 585 613 8577 Director, Hemophilia Treatment Center Director of Education, National
Email: ancaines@gmail.com and Hemostasis Program, Hemophilia Foundation
Associate Professor of Pediatrics, 116 West 32nd Street, 11th Floor, New
Caggana, Michele ScD
Children's Hospital Of Michigan/Wayne York, NY 10001
Email: mxc08@health.state.ny.us
State University Phone: 212-328-3738
Campbell, Fiona Phone: 313-745-5515 Email: rcrawford@gmail.com
Email: fiona.campbell@sickkids.ca Email: mchitlur@dmc.org
Creary, Melissa MPH
Campbell, Scott MSPH Ciliberti, Andrea Health Scientist, Division of Blood
Health Scientist, Division of Blood Email: ematoncoped@operapadrepio.it Disorders, Centers for Disease Control
Disorders, Centers for Disease Control and Prevention
Cioffi, Gina M. BA, JD 1600 Clifton Road, NE, MS E64, Atlanta,
and Prevention
Executive Director, Cooley's Anemia GA 30333
1600 Clifton Road, MS E-64, Atlanta, GA
Foundation Phone: 404-498-6694
30333
129-09 26th Avenue, Flushing, NY 11354 Email: mcreary@cdc.gov
Phone: (404) 498-4026
Phone: 800-522-7222
Email: sic3@cdc.gov
Email: g.cioffi@cooleysanemia.org Critchley, Sara E. RN, MS
Campos, Anne Ayling Division of Blood Disorders, Centers for
Email: anne.aylingcampos@sickkids.ca Clark, Colleen BA Disease Control and Prevention
Post Baccalaureate Fellow, National 1600 Clifton Rd, NE, MS E-64, Atlanta,
Carlson, Claire A. RN, BSN Institutes of Health GA 30333
Nurse Coordinator, Cancer Survivorship Building 31 - Claude D Pepper Building, Phone: 404-498-6699
Program, Children's Hospital of B1B55, 31 Center Dr, Bethesda, MD Email: scritchley@cdc.gov
Philadelphia 20892
Email: carlsoncl@email.chop.edu Phone: 301-443-2491 Curtis, Randall MBA
Email: clarkce@mail.nih.gov Email: factor8@sbcglobal.net
Casale, Maddalena MD
Department of Pediatrics, Second Claster, Susan MD Cuthbert, Carla PhD, FCCMG, FACMG
University of Naples, Naples, Italy Director of Clinical Hematology, Chief, Newborn Screening and Molecular
Phone: +39 081 5665421 Children's Hospital Los Angeles Biology Branch, Centers for Disease
Email: casale.maddalena@gmail.com 4650 Sunset Blvd, Mail Stop 54, Los Control and Prevention
Angeles, CA 90027 4770 Buford Highway, MS-F43, Atlanta,
Chambers, David D. Phil Phone: 323-361-5507 GA. 30341
Associate Director, NIMH Chief, Services Email: sclaster@chla.usc.edu Phone: 770-488-7571 Email: ccuthbert@
Research and Clinical Epidemiology cdc.gov
Branch Chief, Division of Services and Colombatti, Raffaella MD, PhD
Intervention Research National Institute Physician, Clinic of Pediatric
of Mental Health Hematology-Oncology
6001 Executive Blvd., Room 7164, 3, Padova, 35100, Italy
Bethesda, MD 20892-9631 Phone: 0039-345-5356570
Phone: 301-443-3747 Email: rcolombatti@gmail.com
Email: dchamber@mail.nih.gov
De Staercke, Christine PhD Durst, Kathleen LCSW

D Division of Hereditary Blood Disorders, Cooley’s Anemia Foundation
Centers for Disease Control and Phone: 800-522-7222
Daitch, Lauren MPH
Prevention Email: k.durst@cooleysanemia.org
Director of Education, Foundation for
1600 Clifton Road, MS D02, Atlanta, GA
Women & Girls with Blood Disorders, Dyson, Simon PhD
30333
11 Cloverhill Place, Montclair, NJ 07042- Professor of Applied Sociology, Room
Phone: 404-639-3926
4818 1.27 Hawthorn Building
Email: cld7@cdc.gov
Phone: 917-763-3390 De Montfort University, Leicester LE1
Email: ldaitch@fwgbd.org Del Vecchio, Gian Carlo 9BH
Email: g.delvecchio@bioetaev.uniba.it Phone: +44 (0)116 257 7751
Damiano, Mary Lou RN, Med
Email: sdyson@dmu.ac.uk
National Blood Clot Alliance Diaz, Vanessa MD, MS
120 White Plains Road, Suite 100, Associate Professor, Department of Dyson, Susan MD, PhD
Tarrytown, NY 10591 Family Medicine, Medical University Reader in Nurse Education
Phone: 914-220-5040 of South Carolina, 295 Calhoun Street, Head of Nursing and Midwifery
Email: MDamiano@azcc.arizona.edu Charleston, SC 29425 Research,
Phone: 843-792-7241, Director Nursing and Midwifery
Dean, Geraldine Cullen RN, MN
Email: diazva@musc.edu Research Centre (NMRC)
Email: geraldine.cullen-dean@sickkids.
Email: SMcCartney@dmu.ac.uk
ca DiMichele, Donna MD
Deputy Director, Division of Blood
Deans, Tenecia A. MD
Diseases and Resources National Heart,
Cardiology Fellow, Emory University
National Institutes of Health
E
School of Medicine
6701 Rockledge Drive, Room 9136, Earl, Laura RN, BSN, CACP
1648 Pierce Drive, Atlanta, GA 30322
Bethesda, MD 20892-7950 National Blood Clot Alliance, 120 White
Phone: 404-727-5640
Phone: 301- 435-0080 Plains Road
Email: tsallen@emory.edu
Email: donna.dimichele@nih.gov Suite 100, Tarrytown, NY 10591
DeBaun, Michael MD, MPH Phone: 914-220-5040 Email: LEEarl@
Dominic, Trish
Professor of Pediatrics and Medicine, JC salud.unm.edu
CEO, Hemophilia of Georgia, 8800
Peterson Endowed Chair in Pediatrics,
Roswell Road Suite 170, Atlanta, GA Earley, Marie PhD
Vice Chair for Clinical Research,
30350 Research Microbiologist, Newborn
Pediatrics, Director, Vanderbilt-Meharry
Phone: 770-518-8272 Screening Quality Assurance Program,
Center of Excellence in Sickle Cell
Email: padominic@hog.org Centers for Disease Control &
Disease, Vanderbilt Children’s Hospital
2200 Children’s Way, Room 11206, DOT, Prevention
Droze Karen Amy MS
Nashville, TN 37232-9000 Phone: 770-488-7828
Regional Coordinator, Region IV-South
Phone: 615-875-3040 Email: MEarley@cdc.gov
Hemophilia Treatment Center 8800
Roswell Road, Suite 170, Atlanta, GA
DeCastro, Laura MD
Email: Kadroze@hog.org Eckman, James MD
Associate Professor of Medicine, Clinical
Director, Duke Adult Comprehensive Professor, Hematology and Medical
Dubin, Corey
Sickle Cell Center Oncology, Winship Cancer Institute at
President, Committee of Ten Thousand/
DUMC Box 3939, Durham, NC 27710 Emory University School of Medicine
WEST
Phone: 919-684-6464 Director, Georgia Comprehensive Sickle
Phone: DC Office (800) 488-2688 CA
Email: decas004@mc.duke.edu Cell Center, Grady Health System
Office: (805) 967-6679
Phone: 404-778-1340
Email: coyote@silcom.com
Jenkins, D'Etta RN, BC, DNP, MSM, Email: jeckman@emory.edu
CMC Duncan, Natalie MPH
Registered Nurse, Georgia Health Eng, Jennifer MD
Program Manager, Disease Management,
Sciences University Fellow, Pediatric Hematology /Oncology
Indiana Hemophilia & Thrombosis
987 Saint Sebastian Way, Augusta, GA and Stem Cell Transplant, Steven and
Center, 8402 Harcourt Rd, Ste. 500,
30912 Alexandra Cohen Children's Medical
Indianapolis, IN 46260
Phone: 478-272-0335 Center of New York
Phone: 317-871-0011
Email: dettajenkins@yahoo.com 269-01 76th Avenue, Suite 255, New
Email: nduncan@ihtc.org
Hyde Park, NY 11040
De Mattia, Domenico Email: Engj1628@hotmail.com
Email: demattia@bioetaev.uniba.it
Evatt, Bruce MD Fish, Jonathan D. MD Fullam, Lisa

2094 Valiant Drive, NE, Atlanta, GA Assistant Professor of Pediatrics, Hofstra National Blood Clot Alliance
30345 North Shore - LIJ School 120 White Plains Road, Suite 100
Phone: 404 784 7045 269-01 76th Avenue, Suite 255, New Tarrytown, NY 10591
Email: ble2@mindspring.com Hyde Park, NY 11040 Phone: 914-220-5040
Phone: 718-470-3094 Email: Lisa4LFA@aol.com
Everett, Charles PhD Email: jfish1@nshs.edu
Research Associate, Department of Fung, Elizabeth PhD, LCSW
Family Medicine, Medical University of Flax, Patrice MS, MSW Children's Memorial Hospital
South Carolina National Hemophilia Foundation 2300 Children's Plaza, Box 130, Chicago,
295 Calhoun Street, Charleston, SC Phone: 734-890-2504 IL 60614
29425 Email: PFlax@hemopilia.org Phone: 773-880-4489
Phone: 843-792-3413 Email: elfung@childrensmemorial.org
Email: everettc@musc.edu Fletcher, Sue PhD
Research & Special Programs
Coordinator, Hemophilia of North G
F Carolina
Phone: 919-319-0014 Gamerman, Susan MS, PNP-BC
Fabrizzi, Benedetta Email: sue.fletcher@hemophilia-nc.org Nurse, Children's Memorial Hospital
Email: b.fabrizzi@yahoo.it 2300 Children's Plaza, Box 30, Chicago,
Forsberg, Ann MA, MPH IL 60614
Faiz, Ambarina MD, PhD Administrator, University of Phone: (773) 880-4620
Instructor of Medicine, Department Massachusetts Medical School Email: sgamerman@childrensmemorial.
of Medicine/ Division of Hematology, H8-532, 55 Lake Avenue, Worcester, MA org
UMDNJ-Robert Wood Johnson Medical 01605
School, P.O. Box 19, MEB 378 Phone: 774-441-6047 Garcia, Erika MPA
1 Robert Wood Johnson Place, New Email: anfn.forsberg@umassmemorial. Health Systems Analyst, Michigan
Brunswick, NJ 08903-0019 org Department of Community Health,
Phone: 732-235-7678 201 Townsend Street, Capitol View
Email: faizas@umdnj.edu Fragueiro, Dianne MPH Building, Lansing, MI 48913
Manager, ICF International, 11420 Phone: 517-373-7144
Faughnan, Marie E. MD Rockville Pike, Rockville, MD 20852 Email: garciaeri@michigan.gov
Director HHT Program, Associate Phone: 240-747-4767
Professor, University of Toronto Email: dFragueiro@icfi.com Gately, Faith V. MS
Email: Faughnanm@smh.ca Children's Memorial Hospital
Frick, Neil MS 2300 Children's Plaza, Box 30, Chicago,
Feay, Chad BA Vice President for Research and Medical IL 60614
Manager of Education, Department of Information, National Hemophilia Phone: (773) 880-3393
Education, NHF, 116 West 32nd St. 11th Foundation, 116 West 32nd Street, 11th Email: fvromano@childrensmemorial.org
Fl, New York, NY 10001 Floor, New York, NY 10001
Phone: 212-328-3744 Phone: 212-328-3708 George, Jackie MPH
Email: cfeay@hemophilia.org Email: nfrick@hemophilia.org Sickle Cell Foundation of Georgia, Inc
Phone: 404-755-1641
Feuchtbaum, Lisa MPH, PhD Fridinger, Fred DrPH, CHES Email: j_george@sicklecellatlaga.org
Research Scientist IV, Genetic Disease Office of the Associate Director for
Screening Program Communication Ghaji, Nafisa MBBS, MPH
Calif. Dept. of Public Health, 850 Marina Strategic and Proactive Communications EIS Officer, Divison of Blood Disorders,
Bay Pkway, Mail Stop-8200, Richmond, Branch, Centers for Disease Control and Centers for Disease Control and
CA 94804 Prevention Prevention,
Phone: 510-412-1442 Phone: 404-498-2431 1600 Clifton Road, MS D-02, Atlanta, GA
Email: lisa.feuchtbaum@cdph.ca.gov Email: ffridinger@cdc.gov 30333
Phone: 404-718-4036
Finch, Angela Friedman, Richard MD, FRCSC Email: vid9@cdc.gov
Email: angela_finch@doh.state.fl.us National Blood Clot Alliance
120 White Plains Road,
Suite 100, Tarrytown, NY 10591
Phone: 914-220-5040
Email: rjfriedman@mybones.com
Gibson, Robert MD,MSOTR/L Greene, Yvonne Hankins, Jane MD, MS

Associate Professor, Medical College of Program Consultant/RuSH Study Assistant Professor Hematology, St. Jude
Georgia, EC-2320 Coordinator, Sickle Cell Syndrome Children’s Research Hospital, 262 Danny
Augusta, GA 30912 Program, NC Division of Public Health Thomas Place, Mail Stop 800, Memphis,
Phone: 706-721-3641 Phone: (919) 707-5717 TN 38150
Email: rgibson@mcg.edu Email: yvonne.greene@dhhs.nc.gov Phone: 901-595-4153
Email: Jane.Hankins@STJUDE.ORG
Gill, Navreet RN, MN Greist, Anne MBBS
Clinical Research Nurse Coordinator, Co-Medical Director, Indiana Hemophilia Hansen, John-Bjarne MD PhD
The Hospital for Sick Children, and Thrombosis Center Hematological Research Group (HERG),
Department of Child Health Evaluative Phone: 317-871-0000 University of Tromsø
Sciences Email: agreist@ihtc.org Phone: +47-77-6691-92
Phone: 416-813-7654 ext. 2332 Email: john.bjarne.hansen@unn.no
Email: navreet.gill@sickkids.ca Grigorescu, Violanda MD, MSPH
Chief, Applied Sciences Branch, Centers Harris, Katharine B.
Ginsberg, Jill P. MD for Disease Control Email: kbh02@health.state.ny.us
Associate Professor of Pediatrics, 201 Townsend Street, Atlanta, GA
University of Pennsylvania Phone: 517-335-9166 Harris, William
Email: GINSBERGJI@email.chop.edu Email: vdg6@cdc.gov Data Consultant, California Dept. of
Public Health
Giordano, Paola Groft, Stephen C. Pharm.D. 850 Marina Bay Parkway, Mail Stop-8200,
Email: paola.giordano@gmail.com Director, Office of Rare Diseases Richmond, CA 94804
Research, National Institutes of Health Phone: 510-412-1442
Goel, Ruchika, MD, MPH 6100 Executive Boulevard, Room 43A07, Email: william.harris@cdph.ca.gov
Post-Doctoral Fellow, MSC 7518, Bethesda, MD 20892-7518
Children's Hospital Of Pittsburgh of Phone: 301-435-6041 Harris,Yael MD
UPMC Email: grofts2@od.nih.gov Endocrinologist,
4401 Penn Avenue, Pittsburgh, PA 15224 Long Island Jewish Medical Center
Phone: 412-404-6075 Grosse, Scott PhD New Hyde Park, NY 11040
Email: ruchikagoel1@gmail.com Research Economist and Associate Email: YHarris@nshs.edu
Director for Health Services, Division
Gopal-Srivastava, Rashmi PhD of Blood Disorders, Centers for Disease Hassell, Kathryn MD
Director, Extramural Research Program, Control and Prevention National Blood Clot Alliance, 120 White
National Institutes of Health, 6100 1600 Clifton Road, MS E-64, Atlanta, GA Plains Road, Suite 100, Tarrytown, NY
Executive Blvd, Suite 3B-01 Rockville, 30333 10591
MD 20852 Phone: 404-498-3074 Phone: 914-220-5040 Email: kathryn.
Phone: 301-402-4336 Email: sgrosse@cdc.gov hassell@ucdenver.edu
Email: goplr@mail.nih.gov
Gruppo, Ralph MD Haugstad, Kimberly MBA
Grant, Althea PhD Email: ralph.gruppo@cchmc.org Executive Director, Hemophilia
Team Lead, Division of Blood Disorders, Guzman, Vanessa BA Federation of America
Centers for Disease Control and Research Assistant, University of 210 7th Street SE/Suite 200B
Prevention Southern California, Keck School of Washington, DC 20003
1600 Clifton Road, MS E-64, Atlanta, GA Medicine Phone: 202-675-6984
30333 5000 Sunset Blvd, Los Angeles, CA Email: k.haugstad@hemophiliafed.org
Phone: 404-498-6719 90027
Email: agrant@cdc.gov Hayashi, A. Seiji MD, MPH, FAAFP
Email: eiverson@chla.usc.edu
Chief Medical Officer, Bureau of Primary
Green, Deborah BS Health Care, Health Resources and
Program Administrator/ Director of Services Administration
Health Education, Sickle Cell Disease H 5600 Fishers Lane, 17-105, Rockville, MD
Foundation of California 20857
Haley, Lillian PhD, MSW
5777 W. Century Blvd., Suite 1230 Los Phone: 301-594-4110
Georgia Health Policy Center, Georgia
Angeles, CA 90045 Email: shayashi@hrsa.gov
State University
Phone: 310-693-0247
Phone: 404-413-0280
Email: deborahg@scdfc.org
Email: alhldh@langate.gsu.edu
Haywood, Carlton Jr. PhD, MA Humes, Steven MM, MPH Johnson, Kathleen PharmD, MPH,
Assistant Professor of Medicine, John Secretary, ATHN Board of Directors, PhD
Hopkins School of Medicine, 1809 Regional Coordinator, University Professor, Titus Family Department of
Ashland Avenue, Deering Hall, Room of North Carolina at Chapel Hill, Clinical Pharmacy and Pharmaceutical
210, Baltimore, MD 21205 Hemophilia Diagnostic and Treatment Economics and Policy, University of
Phone: 410-614-5571 Center, Chapel Hill, NC Southern California
Email: chaywood@jhap.edu Email: steven_humes@med.unc.edu 1985 Zonal Avenue PSC 100, Los
Angeles, CA 90089
Heit, John MD Hunter, Faith MBA, ERYT Phone: 323-442-1393
Professor of Medicine, College of FitFactor Program Coordinator Email: kjohnson@usc.edu
Medicine, Mayo Clinic Hemophilia Federation of America
200 First Street SW Rochester, MN 210 7th Street Se/Suite 200B Johnson, Yvonne Fry MD, MSCR
55905 Washington, DC 20003 Pediatrics Sr. Research Associate,
Email: heit.john@mayo.edu Phone: 202-675-6984 Morehouse School of Medicine
Email: f.hunter@hemophiliafed.org Phone: 404-756-5761
Hooper, Craig PhD Email: yfry@msm.edu
Branch Chief, Division of Blood
Disorders, Centers for Disease Control Jordan, Lanetta MD, MPH, MSPH
1600 Clifton Rd, MS D02, Atlanta, GA
I Physician Sickle Cell Services, Memorial
30333 Ingman, Kathleen PhD Health Services
Phone: 404-639-3750 Clinical Director, Children's Center for 3501 Johnson Street, Hollywood, FL
Email: chooper@cdc.gov Cancer and Blood Diseases, USC Keck 33021
School of Medicine Phone: 954-265-5350
Hoots, W. Keith M.D. 4650 Sunset Blvd MS 54 Los Angeles, CA Email: Ljordan@mhs.net
Director, Division of Blood Diseases and 90027
Resources, National Heart, Lung, and Email: kingman@chla.usc.edu
Blood Institute, National Institutes of
Health, 6701 Rockledge Drive, Room Ingram-Rich, Robina BSN, MS, MPH K
9136 Region X Coordinator Hemophilia Kapica, Suzanne MA, LPC
Bethesda, MD 20892-7950 Programs/ Assistant Professor, Oregon Region V-East Coordinator/ Deputy
Phone: (301) 435-0080 Health & Science University Director, Hemophilia Foundation of
Email: hootswk@nhlbi.nih.gov 707 SW Gaines Road, Portland, OR Michigan
97034 1921 West Michigan Avenue, Ypsilanti,
Hoppe, Carolyn MD Phone: 503-494-2715 MI 48197
Associate Hematologist/ Oncologist, Email: ingramr@ohsu.edu Phone: 734-544-0015
Children's Hospital & Research Center
Iverson, Ellen MPH Email: suzanne@hfmich.org
Oakland, 747 52nd St, Oakland, CA
94609 Assistant Professor of Pediatrics, Kaplan Elkin, Judi MEd
Phone: 510-428-3193 Children's Hospital Los Angeles Director of Regional Development &
Email: choppe@mail.cho.org 5000 Sunset Blvd, Los Angeles, CA Education, National Blood Clot Alliance,
90027 120 White Plains Road, Suite 100,
Hroma, Nichole BS, PT Email: elleni@chla.usc.edu Tarrytown, NY 10591
Children's Memorial Hospital
Phone: 914-220-5040
2300 Children's Plaza, Box 142, Chicago,
Email: jelkin@stoptheclot.org
IL 60614 J
Phone: (773) 327-2789 Kelly, Fiona MPH
Email: nhroma@childrensmemorial.org James, Andra MD
Project Coordinator, Division of Blood
Associate Professor, Obstetrics &
Hulihan, Mary MPH Gynecology, Duke University Medical
1600 Clifton Road, MS E-64, Atlanta, GA
Health Scientist, Division of Blood Center, Box 3967, Durham, NC 27710
30333
Disorders, Centers for Disease Control Phone: 919-681-5220
Phone: 404-498-6735
1600 Clifton Road, MS E-64, Atlanta, GA Email: andra.james@duke.edu
Email: gvu0@cdc.gov
30333
Phone: 404-498-6724 Jauhar, Sandeep MD
Email: ibx5@cdc.gov Cardiologist, Department of Medicine,
Division of Cardiology, Long Island
Jewish Medical Center
New Hyde Park, NY 11040
Email: SJauhar@nshs.edu
Kennedy, Joseph Klein, Irwin MD Phone: 412-692-7192

Email: jkennedy@health.nyc.gov Chief, Division of Endocrinology, North Email: lakshmanan.krishnamurti@chp.
Shore University Hospital edu
Kenney, Kristy MPH Manhasset, NY 11030
Health Scientist, Division of Blood Email: IKlein@nshs.edu Kulkarni, Roshni MD
Disorders, Centers for Disease Control Professor, Department of Pediatrics,
1600 Clifton Road, MS E-64, Atlanta, GA Kleyn, Mary MSc Michigan State University, 1200 E
30333 Epidemiologist, Newborn Screening Michigan Ave, Lansing, MI 48912
Phone: 404-498-0185 Program, Michigan Department of Phone: 517-364-5440
Email: hsl7@cdc.gov Community Health Email: roshni.kulkarni@hc.msu.edu
201 Townsend Street, PO Box 30195,
Kerlin, Bryce MD Lansing, MI 48909 Kutlar, Abdullah MD
Associate Professor of Pediatrics, Ohio Phone: 517-335-9296 Professor of Medicine
State University College of Medicine, Email: kleynm@michigan.gov Director, Sickle Cell Center, Medical
Director, Division ofHematology/ College of Georgia
Oncology/ BMT Nationwide Children's Knapp-Clevenger, Rhonda PhD 1521 Pope Avenue Augusta, GA 30912
Hospital Research Nurse NIH CTRI, Department Phone: 706-721-2171
700 Children's Drive Columbus, OH of Pediatrics Email:akutlar@mcg.e du
43205-2696 School of Nursing and Children's
Phone: 614-722-3564 Hospital Colorado, Aurora, CO 80045
Email: Bryce.Kerlin@ Phone: 303-724-0365 L
nationwidechildrens.org Email: rhonda.knapp-clevenger@
childrenshospitalcolorado.org Ladogana, Silverio
Kessler, Craig MD Email: s.ladogana@libero.it
Professor of Medicine, Georgetown Knoll, Michele MA
University Medical Center, Director, Grants Coordinator, Medical University Lal, Ashutosh MD
Division of Coagulation, Department of South Carolina, 295 Calhoun Street, Associate Hematologist/ Oncologist,
of Laboratory Medicine, Director, Charleston, SC 29425 Hematology/ Oncology, Children's
Therapeutic and Cellular Apheresis Unit Phone: 843-792-8112 Hospital & Research Center Oakland,
Phone: 202-444-8676 Email: knollm@musc.edu 747 52nd St, Oakland, CA 94609
Email: kesslerc@gunet.georgetown.edu Phone: 510-428-3172
Koerper, Marion MD Email: alal@mail.cho.org
Khan, Imran MD, PhD Professor of Pediatric Hematology,
Hematology/Oncology Fellow, UMDNJ- UCSF School of Medicine, Box 0106, San Lally, Cathy MSPH
Robert Wood Johnson Medical School Francisco CA 94143-0106 Epidemiologist, Department of
P.O. Box 19, MEB 378, 1 Robert Wood Phone: 415-476-4901 Epidemiology, Emory University
Johnson Place, New Brunswick, NJ Email: marionkoerper@sbcglobal.net 1518 Clifton Road, Atlanta, GA 30322
08903-0019 Phone: 404-712-2679
Phone: 732-235-7678 Konkle, Barbara MD Email: clally@emory.edu
Email: khanim@umdnj.edu Professor of Medicine, University of
Washington School of Medicine Director, Landi, Daniel MD
Kirby, Russell PhD, MS FACE Translational Research, Medical Director Pediatric Resident, Department of
Professor and Marrell Endowed Chair, Hemostasis Reference Laboratory, Puget Pediatrics, Duke University Medical
USF College of Public Health Sound Blood Center Center
13201 Bruce B. Downs Blvd., MDC 56, Phone: 206-233-3349 Box 2808 DUMC, Durham, NC 27710
Tampa, FL 33612 Email: BarbaraK@psbc.org Phone: 512-203-6126
Phone: 813-396-2347 Email: Daniel.Landi@duke.edu
Email: rkirby@health.usf.edu Kouides, Peter MD
Hematologist, Hematology, Mary Gooley Lane, Heidi PT, DPT, PCS
Kiren, Valentina Main St, Rochester, NY 30033 Physical Therapist, Intermountain
Email: vkiren@gmail.com Phone: 847-888-5656 Hemophilia and Thrombosis Center,
Email: pk@gooley.org Primary Children's Medical Center
Kirschman, Ruth Ann WHNP-BC, MS 100 N. Mario Capecchi Dr, Salt Lake City,
Center for Women’s Health Krishnamurti, Lakshmanan MD UT 84113
125 Inverness Drive South, Suite 210 Associate Professor/Director Of Phone: 801-662-4723
Englewood, CO 80112 Hematology and Hemoglobinopathy, Email: heidi.lane@hsc.utah.edu
Phone: 303-755-0120 x-126 Children's Hospital Of Pittsburgh of
Email: ruthannrnc@comcast.net UPMC
4401 Penn Avenue, Pittsburgh, PA 15224
Lane, Peter MD Liu, Johnson MD Matsunaga, Alison MD

Professor of Pediatrics, Emory Associate Professor, Department of Associate Hematologist/ Oncologist,
University School of Medicine Pediatrics, Division of Pediatric Cohen Hematology/ Oncology, Children's
Director, Hematology Program Aflac Children's Medical Center of New York Hospital & Research Center Oakland,
Cancer Center and Blood Disorders 269-01 76th Avenue, New Hyde Park, NY 747 52nd St, Oakland, CA 94609
Service 11040 Phone: 510-428-3286
Sickle Cell Disease Program, Children’s Phone: 516-562-4844 Email: amatsunaga@mail.cho.org
Healthcare of Atlanta Email: jliu3@nshs.edu
Phone: 404-785-0874 Maynard, Greg MD, MSc, SFHM
Email: plane@emory.edu Lobo, Clarisse MD National Blood Clot Alliance, 120 White
Director, Hematology, HEMORIO, Rio de Plains Road Suite 100, Tarrytown, NY
Lanzkron, Sophie M. MD, MHS Janeiro, Brazil 10591
Assistant Professor of Medicine, Phone: 21-2332-8620 Phone: 914-220-5040
Department of Medicine Hematology Email: diretoria@hemorio.rj.gov.br Email: gmaynard@ucsd.edu
Division, Assistant Professor of Medicine,
Department of Oncology, Johns Hopkins Lockhart, Evelyn MD McAlister, Sally BSN
University, Associate Medical Director, Duke Director, Medical Science
1830 E. Monument Street, Suite 7300, University School of Medicine, Biogen Idec Hemophilia
Baltimore, MD 21205 Transfusion Service, Box 2928, Room 133 Boston Post Rd, Bldg 15-123,
Phone: 410-502-7770 1720, Duke North, Durham, NC 27710 Weston, MA 02493
Email: slanzkr@jhmi.edu Phone: 919-613-5126 Phone: 781-464-4238
Email: evelyn.lockhart@duke.edu Email: Sally.McAlister@BiogenIdec.com
Leibson, Cynthia PhD
Mayo Clinic, 200 First Street SW Lou, Mimi MS McCann, Mary Ellen RN, MA
Rochester, MN 55905 Project Manager, University of Southern Director, Health Learning & Marketing,
California National Blood Clot Alliance, 120 White
Li, Lun BA 1985 Zonal Avenue, PSC 206B-E, Los Plains Road, Suite 100, Tarrytown, NY
Research Assistant, Hematology/ Angeles, CA 90033 10591
Oncology, Children's Hospital & Phone: 323-442-1048 Phone: 914-220-5040
Research Center Oakland Email: mimilou@usc.edu Email: mmccann@stoptheclot.org
747 52nd St, Oakland, CA 94609
Phone: 510-428-3172 McCool, Kathleen PharmD, BDPS,
Email: ashulal@gmail.com M CACP
National Blood Clot Alliance, 120 White
Li, Tengguo PhD Macharia, Alex Plains Road, Suite 100, Tarrytown, NY
Guest Researcher, CDC Centre for Geographic Medicine 10591
Phone: 404-639-4033 Research, Kilifi, Kenya Phone: 914-220-5040
Email: Uyy7@cdc.gov Email: amacharia@kilifi.kemri-wellcome. Email: Kathleen.H.Mccool@kp.org
org
Lipton, Jeffrey M. MD, PhD Mili, Fatima D. MD, PhD
Chief, Hematology/Oncology and Stem Mainous, Arch PhD Epidemiologist, Division of Blood
Cell Transplantation/ Professor, Cohen Professor, Department of Family Disorders, Centers for Disease Control
Children's Medical Center of New York/ Medicine, Medical University of and Prevention
The Feinstein Institute for Medical South Carolina, 295 Calhoun Street, 1600 Clifton Road, MS D02, Atlanta, GA
Research Charleston, SC 29425 30333
269-01 76th Ave New Hyde Park, NY Phone: 843-792-6986 Phone: 404-639-0638
11040 Email: mainouag@musc.edu Email: fmili@cdc.gov
Phone: 718-470-3703
Manco-Johnson, Marilyn MD Miller, Connie PhD
Email: jlipton@nshs.edu
Professor of Pediatrics, University of Research Biologist, Research Laboratory
Liu, Jimmy C. MD Colorado Branch, Division of Blood Disorders,
Internal Medical Resident, Department 13199 E. Montview Blvd, Suite 100, MS Centers for Disease Control and
of Medicine, Division, c/o Hemophilia F416, Aurora, CO 80045 Prevention
Center of Western PA Phone: 303-724-0365 1600 Clifton Road MS D02, Atlanta, GA
3636 Boulevard of the Allies, Pittsburgh, Email: Marilyn.Manco-Johnson@ 30333
PA 15213-4306 ucdenver.edu Phone: 404-639-2851
Phone: 412-209-7288 Email: crm5@cdc.gov
Masera, Nicoletta
Email: liujc@upmc.edu
Email: n.masera@hsgerardo.or
Miller, Mary Ellen (Mel) MA Nichols, Jeanette PNP Ojodu, Jelili MPH
Project Director, ICF International, Nurse Practitioner, Children's Hospital & Director, Newborn Screening and
11420 Rockville Pike, Rockville, MD Research Center Oakland Genetics, Association of Public Health
20852 747 52nd St, Oakland, CA 94609 Laboratories
Phone: 240-747-4750 Phone: 510-428-3372 8515 Georgia Avenue, Suite 700, Silver
Email: mmiller3@icfi.com Email: jnichols@mail.cho.org Spring, MD 20910
Phone: 240-485-2772
Moll, Stephan MD Nocerino, Agostino Email: jelili.ojodu@aphl.org
Associate Professor of Medicine, School Email: agostino.nocerino@uniud.it
of Medicine, University of North Carolina O'Neil, Sharon H. PhD
at Chapel Hill Notarangelo, Lucia Dora Director, Neuropsychology, Children's
CB 7035, Chapel Hill, NC 27517 Email: uciadora.notarangelo@ Center for Cancer and Blood Diseases,
Phone: 919-966-3311 spedalicivili.brescia.it Children's Hospital Los Angeles, 4650
Email: smoll@med.unc.edu Sunset Blvd MS 54, Los Angeles, CA
Nugent, Diane MD
90027
Monahan, Paul MD Director and Chief of Hematology,
Email: shoneil@chla.usc.edu
Email: paul_monahan@med.unc.edu Department of Pediatrics, CHOC and
The Center for Inherited Blood Disorders O'Neill, Robin MPH
Moore, Charity PhD, MSPH 455 South Main Street Orange, CA 92868 Michigan Hemoglobinopathy Surveillance
Associate Professor of Medicine and Phone: 714-532-8459 and Quality Improvement,
Biostatistics, and Clinical, University of Email: dnugent@choc.org Michigan Department of Community
Pittsburgh Health
200 Meyran Avenue, Suite 300, Nunez, Kristin MS, CGC
201 Towsend St, Lansing, MI 48909
Pittsburgh, PA 15213 Senior Genetic Counselor,
Email: oneillr@michigan.gov
Phone: 412-246-6961 Duke University Medical Center
Email: moorecg@upmc.edu DUMC-Box 3967, Durham, NC 27710 Onolememen, Esther O.Pepple
Phone: 919-668-7441 MSW, (NQSW), HDipSocPol, BA, (ED),
Muir, Ellen BS, MA Email: Kristin.nunez@duke.edu Hons
Clinical Nurse Specialist, Cohen PhD Candidate in Public Policy, College
Children's Medical Center of NY of Human Sciences (PhD Candidate in
269-01 76th Avenue, New Hyde Park, NY O Public Policy)
11040 University College Dublin (UCD),
Oakley, Meredith DVM, MPH
Phone: 516-562-1505 Newman Building, Belfield Dublin
Health Scientist, Division of Blood
Email: EMuir@nshs.edu 4Dublin, Dublin 4 Ireland
and Prevention Phone: +353-87-256-7703
1600 Clifton Road, MS E-64, Atlanta, GA Email: onolemee@tcd.ie
N 30333 Ortel, Thomas MD, PhD
Naik, Rakhi MD Phone: 404-498-6729 Professor of Medicine & Pathology, Duke
Clinical Fellow, The Johns Hopkins Email: moakley@cdc.gov University Health System, DUMC 3422,
Hospital Odame, Isaac MD Durham, NC 27710
Email: rsakhi@jhmi.edu Staff Physician, Division ofHematology/ Phone: 919-684-5350
Oncology Email: ortel001@mc.duke.edu
Nazzaro, Ann-Marie PhD
Director of Education, Foundation for Associate Professor, University of
Women & Girls with Blood Disorders Toronto
11 Cloverhill Place, Montclair, NJ 07042- 555 University Avenue, Tornoto, Ontario P
4818 Canada M5G 1X8
Phone: 416-813-6194 Pahuja, Gargi MPH, JD
Phone: 646-265-7489 National Patient Services Director, TAG
Email: amnazzaro@fwgbd.org Email: isaac.odame@sickkids.ca
President
Okoroh, Ekwutosi MD 45 River Drive South, #205, Jersey City,
Neybert, Lauren LGSW
EIS Officer, Division of Blood Disorders, NJ 07310
Program Coordinator, Hemophilia
Centers for Disease Control and Phone: 917-376-1761
Federation of America, 210 7th Street
Prevention Email: gargipahuja@mac.com
SE/Suite 200B, Washington, DC 20003
Phone: 202-675-6984 1600 Clifton Road, MS E-64, Atlanta, GA
30333 Palazzi, Giovanni
Email: l.neybert@hemophiliafed.org Email: giovanni.palazzi@tiscali.it
Phone: 404-498-0130
Email: ile4@cdc.gov
Parker, Christopher PhD, MPH Philipp, Claire MD Presley, Rodney J. PhD

Deputy Director, Division of Blood Department of Medicine/ Division of Division of Blood Disorders, Centers for
Disorders, Centers for Disease Control Hematology, UMDNJ-Robert Wood Disease Control and Prevention
and Prevention Johnson Medical School 1600 Clifton Road NE, MS E-64, Atlanta,
1600 Clifton Road, MS E-64, Atlanta, GA P.O. Box 19, MEB 378, 1 Robert Wood GA 30333
30333 Johnson Place, New Brunswick, NJ Phone: 404-498-6732
Phone: 404-498-6731 08901 Email: RPresley@cdc.gov
Email: CSP2@cdc.gov Email: philipp@umdnj.edu
Primeaux, Judy MA
Parish, Kathy PhD Piel, Frederic B. PhD Director, University of Colorado Denver
Email: klparish@aol.com Malaria Atlas Project Hemophilia and Thrombosis Center
Spatial Ecology and Epidemiology Group 1300 East 17th Place, Room EG 303,
Parmar, Nagina Department of Zoology, University of Denver, CO 80045
Email: nagina.parmar@sickkids.ca Oxford Phone: 303-724-0167
South Parks Road, Oxford OX1 3PS, UK Email: judy.promeaux@ucdenver.edu
Paul, Vinod MD PhD
Phone: 44-1865-281210
Chair, Department of Pediatrics, Pusiol, Anna
Email: fred.piel@zoo.ox.ac.uk
Department of Pediatrics, All India Email: anna.pusiol@uniud.it
Institure of Medical Sciences (AIIMS), Pipe, Steven MD
New Delhi, 110029, India Associate Professor, University of Puthenveetil, Geetha MD
Phone: 2-659-4372 Michigan Pediatric Hematologist, Children's
Email: vinodkpaul@hotmail.com 1500 E. Medical Center Drive, B1, Ann Hospital of Orange County
Arbor, MI 48109 455 South Main Street, Orange, CA
Paulukonis, Susan 92868
Phone: 734-764-7126
Epidemiologist/Project Director CA Phone: 714-532-8459
Email: ummdswp@umich.edu
RuSH, California Department of Public Email: gputhenveetil@choc.org
Health Poon, Jiat-Ling BSc
850 Marina Bay Pkway, Mail Stop-8200, Graduate Student, School of Pharmacy, Pyeritz, Reed MD, PhD
Richmond, CA 94801 University of Southern California Vice Chair for Academic Affairs,
Phone: 510-412-1442 1985 Zonal Ave, OPSC 206B-E, Los Department of Medicine, University of
Email: susan.paulukonis@cdph.ca.gov Angeles, CA 90089-9121 Pennsylvania
Phone: 323-442-1048 Phone: 215-662-4740
Payne, Amanda MPH Email: reed.pyeritz@uphs.upenn.edu
Email: jiatlinp@usc.edu
Biologist, Division of Blood Disorders,
Centers for Disease Control and Pope, Shammara MPH Pyle, Meredith MS
Prevention Health Scientist, Division of Blood Research Biologist, Division of Blood
1600 Clifton Road MS D02, Atlanta, GA Disorders, Centers for Disease Control Disorders, Centers for Disease Control
30333 and Prevention and Prevention
Phone: 404-639-4034 1600 Clifton Road, NE, MS E64, Atlanta, 1600 Clifton Road MS D02, Atlanta, GA
Email: bvx2@cdc.gov GA 30333 30333
Phone: 404-498-0183 Phone: 404-639-4810
Peltier, Skye PA-C, MPH Email: mpyle@cdc.gov
Email: Veg8@cdc.gov
Plains Road, Suite 100, Tarrytown, NY Potter, Rachel DVM, MS
10591
Phone: 914-220-5040
Vaccine-Preventable Disease Q
Epidemiologist, Michigan Department
Email: skyepeltier@yahoo.com of Community Health, 201 Townsend Quary, Sharon
Street, PO Box 30195, Lansing, MI 48909 GA RuSH Collaborative
Perrotta, Silverio
Phone: 517-335-9710 Phone: 404-657-4143
Email: silverio.perrotta@unina.it
Email: PotterR1@michigan.gov Email: scquary@dhr.state.ga.us
Pezzillo, Richard
Powell, Jerry MD Quattrocchi, Richard BA
Communications Manager
Email: jspowell@ucdavis.edu President, Bridge Group Online, Online
Hemophilia Federation of America
Marketing, National Blood Clot Alliance,
Phone: 202-675-6984
120 White Plains Road, Suite 100,
Email: r.pezzillo@hemophiliafed.org
Tarrytown, NY 10591
Phone: 914-220-5040
Email: rq@bridgegrouponline.com
Reyes, Nimia MD, MPH

R Division of Blood Disorders, Centers for S
Disease Control and Prevention, 1600
Raffini, Leslie MD Sabio, Hernan MD
Clifton Road, MS E64, Atlanta, GA 30333
Director, CHOP Hemostasis and Email: hsabio@wfubmc.edu
Phone: 404-498-6733
Thrombosis Center, Children's Hospital
Email: nfr2@cdc.gov Salomon, Michele JD
of Philadelphia
Colkett Building- Rm 11022, 3501 Civic Harris Interactive
Rhynders, Patricia PhD, MPH,
Center Blvd Email: MSalomon@harrisinteractive.com
MCHES
Philadelphia, PA 19104 Samperi, Piera
Program and Evaluation Consultant,
Phone: 267-426-5029 Email: psamperi@unict.it
National Hemophilia Foundation, 1412
Email: Raffini@email.chop.edu Apache Ct, Joshua, TX 76058 Sayers, Cynthia BA
Phone: 817-641-8775 Health Communication Specialist,
Ragni, Margaret V. MD, MPH
Email: rhynders@sbcglobal.net Division of Blood Disorders, Centers for
Professor of Medicine and Clinical &
Translational Science, University of Disease Control and Prevention
Rickles, Frederick R. MD
Pittsburgh School of Medicine 1600 Clifton Road, MS-E-64, Atlanta, GA
3636 Boulevard of the Allies, Pittsburgh, 30333
Plains Road, Suite 100, Tarrytown, NY
PA 15213-4306 Phone: 404-498-0020
10591
Phone: 412-209-7288 Email: cay1@cdc.gov
Phone: 914-220-5040
Email: ragni@dom.pitt.edu Email: Frederick.rickles@gmail.com Schrager, Sheree MS, PhD
Rathbun, Suman MD, MS, FACP, Senior Research Manager, Children's
Riske, Brenda MS, MBA, MPA
FSVM, RVT Hospital LA
Professor of Medicine, Director Vascular 5000 Sunset Blvd, Los Angeles, CA
Plains Road, Suite 100, Tarrytown, NY
Medicine, 920 Stanton L. Young Blvd., 90027
10591
WP3010, Oklahoma City, OK 73104 Email: sschrager@chla.usc.edu
Phone: 914-220-5040
Phone: 405-271-4742 Ext. 44773 Email: Brenda.Riske@UCHSC.edu Shah, Nirmish MD
Email: suman-rathbun@ouhsc.edu
Hematology, Duke University Medical
Roach, Kathleen MPH, MBA
Recht, Michael MD, PhD Center
FortHealthCare
Associate Professor of Pediatrics and Email: nirmish.shah@duke.edu
Phone: 920-568-8849
Medicine, Director, The Hemophilia Email: Kathleen.Roach@forthc.com Shapiro, Amy D. MD
Center, Oregon Health and Science
Medical Director, Indiana Hemophilia
University, 3181 SW Sam Jackson Park Rosenberg, Philip S. PhD
and Thrombosis Center
Road, Mail code: CDRCP Biostatistics Branch, National Institutes
Phone: 317- 871-0000
Phone: 503 494-8716 of Health,
Email: ashapiro@IHTC.org
Email: rechtm@ohsu.edu Email: rosenbep@exchange.nih.gov
Sharathkkumar, Anjali A. MD, MS
Reddy, Kiranmye MD Russo, Giovanna
Email: ASharathkumar@
Fellow, Pediatric Hematology/ Oncology Email: diberuss@unict.it
childrensmemorial.org
and Stem Cell Transplant, Steven and
Alexandra Cohen Children's Medical Ruth, Laird MPH
Siddiqi, Azfar-E-Alam MD, PhD
Center of New York Micronutrient Specialist, Nutrition
Epidemiologist, Division of Blood
269-01 76th Avenue, Suite 255, New Branch, Centers for Disease Control &
Hyde Park, NY 11040 Prevention, 4770 Buford Hwy, Atlanta,
and Prevention
Phone: 718-470-3460 GA 30341
1600 Clifton Road, MS-E-64, Atlanta, GA
Email: kreddy4@nshs.edu Phone: 770-488-5048
30333
Email: lruth@cdc.gov
Phone: 404-498-6738
Reid, Marvin PhD
Email: hwo4@cdc.gov
Sickle Cell Unit, Tropical Medicine
Research Institute, University of the
West Indies, Mona Campus, Kingston 7,
Jamaica (W.I.)
Phone: 876 977 6151-2
Email: marvin.reid@uwimona.edu.jm
Simon, Lenee MPH Soucie, J. Michael PhD

Public Health Analyst, Maternal and Associate Director for Science, Division T
Child Health Bureau, Health Resources of Blood Disorders, Centers for Disease
Tanner, Jean Paul MPH
and Services Administration, 5600 Control and Prevention
Email: jtanner@health.usf.edu
Firshers Lane, Room 18A-19, Rockville, 1600 Clifton Road, MS E64, Atlanta, GA
MD 20857 30333 Taylor, Lois RN, BSN, CPM
Phone: 301-443-8859 Phone: 404-498-6737 Email: Lois_Taylor@doh.state.fl.us
Email: lsimon@hrsa.gov Email: msoucie@cdc.gov
Telfair, Joseph DrPH, MSW, MPH
Sinclair, Beverly Spurlin, Janeth Professor, University of North Carolina
Sickle Cell Foundation of Georgia, Inc Sickle Cell Foundation of Georgia, Inc at Greensboro, 437 HHP Building, 1408
2391 Benjamin E. Mays Dr. S.W. Phone: 404-755-1641 Walker Avenue
Phone: 404-755-1641 Email: j_spurlin@sicklecellatlaga.org P.O. Box 26170, Greensboro, NC 27402-
Email: b_sinclair@sicklecellatlaga.org 6170
Stein, Jason MD SFHM
Phone: 336-334-4777
Skjeldestad, Finn Egil, MD, PhD Assistant Professor of Medicine, Emory
Email: j_telfai@uncg.edu
Professor of Obstetrics & Gynecology, University School of Medicine, Associate
University of Tromsø Director for Quality, Director Clinical Tenzca, Catherine B. MS
N-9038 Tromsø Research Program, Division of Hospital National Blood Clot Alliance, 120 White
Norway Medicine, Associate Vice Chair for Plains Rd, Suite 100, Tarrytown, NY
Email: eskjelde@online.no Quality, Department of Medicine 10591
1364 Clifton Road, Box M7 Phone: 914-220-5040
Sloyer, Phyllis RN, PhD, FAHM, FAAP Atlanta, GA 30322 Email: cathy@tenczadesigns.com
Email: Phyllis_Sloyer@doh.state.fl.us Pager: 404.686.5500 (Pager ID 17387)
Simmons, Gretchen MPH, MCHES Email: jstei04@emory.edu Thierry, JoAnn PhD
Health Education Specialist, Division Division of Blood Disorders, Centers for
of Blood Disorders, Centers for Disease Stille, Christopher MD, MPH Disease Control and Prevention
Control and Prevention Professor and Head, General Academic Phone: 404-498-0197
1600 Clifton Road, MS E-64, Atlanta, GA Pediatrics University of Colorado Email: JXT4@cdc.gov
30333 Denver/Children's Hospital Colorado
Phone: 404-498-6734 13123 East 16th Avenue, B032 Aurora, Thomas, Iyamide BSc
Email: guu3@cdc.gov CO 80045 Regional Care Advisor- London South,
Phone: 720-777-2744 Sickle Cell Society
Smith, Danielle MPH Email: Christopher.stille@ 54 Station Rd, London NW10 4UA
Hemoglobinopathy Surveillance childrenscolorado.org Phone: 020 7635 9328
Evaluator, Bureau of Disease Control, Email: iyamide.thomas@sicklecellsociety.
Prevention, and Epidemiology Su, Ying MD
org
201 Townsend St, PO Box 30195, Health Scientist, Informatics, Division
Lansing, MI 4890 of Blood Disorders, Centers for Disease Thomas, Sanil MS
Phone: 810-334-0442 Control and Prevention, 1600 Clifton Program Research Specialist II, New
Email: SmithD87@michigan.gov Road, MS E-64, Atlanta, GA 30333 York State Department of Health
Phone: 404-498-6244 547 River Street-Rm 200, Troy, NY 12180
Snyder, Angela PhD, MPH Email: yds0@cdc.gov Phone: 518-402-7718
Child Policy Director, Email: sxt15@health.state.ny.us
Georgia State University Suchdev, Parminder, MD, MPH
Phone: 404-413-0285 Assistant Professor of Pediatrics and
Thornburg, Courtney MD, MS
Email: angiesnyder@gsu.edu Global Health; Medical Epidemiologist,
Associate Professor, Duke University
Pediatrics Emory University; Centers for
DUMC Box 102382, Durham, NC 27710
Solberg, Lawrence A. Jr., MD, PhD Disease Control and Prevention
Phone: 919-684-3401
Consultant, Mayo Clinic 1405 Clifton Rd NE, Atlanta, GA 30322
Email: thorn006@mc.duke.edu
4500 San Pablo Road, Jacksonville, FL Phone: 4047851674
32224 Email: psuchde@emory.edu Titi Singer, Sylvia MD
Phone: 904-953-2000 Sundaram, Suchitra MBBS Associate,Children's Hospital & Research
Email: solberg.lawrence@mayo.edu Clinical Research Assistant, Children’s Center Oakland, 747 52nd St, Oakland,
Hospital of Pittsburg of UPMC CA 94609
4401 Penn Avenue, Pittsburg, PA 15224 Phone: 510-428-3169
Phone: 919-518-4154 Email: tsinger@mail.cho.org
Email: suchitra.sundaram@yahoo.com
Tobase, Patricia PT, DPT, OCS Vichinsky, Elliott MD Ward, R. Scott PT, PhD
Associate Clinical Professor, UCSF Medical Director, Children's Hospital & Professor and Chair, Department of
School of Medicine Research Center Oakland Physical Therapy University of Utah, 520
Box 0625, San Francisco, CA 94143 747 52nd St, Oakland, CA 94609 Wakara Way, Salt Lake City, UT 84108
Email: patricia.tobase@ucsfmedctr.org Phone: 510-428-3651 Email: scott.ward@hsc.utah.edu
Email: evichinsky@mail.cho.org
Treadwell, Marsha PhD Ware, Russell E. MD
Email: MTreadwell@mail.cho.org Vlachos, Adrianna MD Baylor College of Medicine Professor
Head, Bone Marrow Failure Program, Pediatrics
Trimble, Sean MPH Assistant Prof of Pediatrics, Cohen Email: reware@bcm.edu
Health Scientist, Division of Blood Children's Medical Center of New York
Disorders, Centers for Disease Control 269-01 76th Ave, New Hyde Park, NY Watson, Crystal
and Prevention 11040 Director of Operations, American
1600 Clifton Road, MS E-64, Atlanta, GA Phone: 516-562-1505 Thrombosis and Hemostasis Network
30333 Email: avlachos@nshs.edu Phone: 404-307-7571
Phone: 404-498-0184 Email: cwatson@athn.org
Email: strimble@cdc.gov Vranesich, Patricia RN, BSN
Section Manager Education/ Outreach, Weinstein, Paula M. MD
Tsai, James MD, MPH Division of Immunization, Michigan Medical Researcher, Emory University
Epidemiologist, Division of Blood Department of Community Health School of Medicine
Disorders, Centers for Disease Control 201 Townsend Street, PO Box 30195, 1648 Pierce Drive, Atlanta, GA 30322
and Prevention Lansing, MI 48909 Phone: 404-727-5640
1600 Clifton Road, MS-E64, Atlanta, GA Phone: 517-335-8641 Email: pweinstein@emory.edu
30333 Email: vranesichp@michigan.gov
Phone: 404-498-6336 Wenger, Nanette K. MD, MACC,
Email: jxt9@cdc.gov MACP, FAHA
Professor of Medicine (Cardiology)
W Emeritus, Emory Heart and Vascular
Center
U Waldron, Beth MA
49 Jesse Hill Jr. Drive, SE, Atlanta, GA
Program Director, Hemophilia and
Ullman, Megan MPH 30303
Thrombosis Center, University of North
Sr. Research Associate, Gulf States Phone: 404-616-4420
Carolina at Chapel Hill
Hemophilia & Thrombophilia Center, Email: nwenger@emory.edu
CB 7305, 3185K Physicians Office
University of Texas Health Science Building, Chapel Hill, NC, 27599-7305 Werner, Ellen PhD
Center at Houston Phone: 919-966-2809 Health Scientist Administrator, NHLBI
Phone: (713) 500-8378 Email: bwaldron@med.unc.edu NIH, 6701 Rockledge Drive
Email: Megan.M.Ullman@uth.tmc.edu
Bethesda, MD 20892
Wang, Angelina BA
Phone: 301-435-0050
Manager of Medical Information,
Email: wernere@nhlbi.nih.gov
V National Hemophilia Foundation
116 West 32nd Street, 11th Floor, New Whiteman, Lauren MPH, CPH
Valentino, Leonard A. MD York, NY 10001 Surveillance Epidemiologist, Memorial
Rush Children’s Hospital Phone: 212-328-3727 Regional Hospital
Suite 710, Chicago, Illinios 60612-3824 Email: AWANG@hemophilia.org 3501 Johnson Street, Hollywood, Fl
Phone: 312-942-8114 33021
Email: lvalentino@rush.edu Wang, Ying PhD, MPH
Phone: 954-265-3355
Chief, Informatics Unit, New York State
Email: LWhiteman@mhs.net
Varga, Elizabeth MS, CGC Department of Health
National Blood Clot Alliance 120 White 547 River Street, Troy, NY 12180
Plains Road, Suite 100, Tarrytown, NY Phone: 518-402-7716
10591 Email: wxy01@health.state.ny.us
Phone: 914-220-5040
Email: eavarga@hotmail.com
Whitten, Pamela PhD

Dean, College of Communication Arts & Y Z
Sciences, Michigan State University
Yamashita, Robert PhD Zecca, Marco
287 Communication Arts & Sciences
Associate Professor, Interdisciplinary Email: m.zecca@smatteo.pv.it
Building
Studies in Science and Society
East Lansing, MI 48824-1212 Zhou, Mei MS
California State University 333 S. Twin
Email: pwhitten@msu.edu Georgia Health Policy Center, Georgia
Oaks Valley Road, San Marcos, CA
92096-0001 State University
Williams, Aimee MPH, CHES, CPH
Phone: 760-750-4204 Phone: 404-413-0310
Project Coordinator, Hemostasis and
Email: yamashta@csusm.edu Email: alhmzzx@langate.gsu.edu
Thrombosis Center, Children’s Hospital
Los Angeles, 4650 Sunset Blvd, Mail Stop Zhou, Zheng-Yi, MS
Young, William L. MD
#54, Los Angeles, CA 90025 Email: zhengyzh@usc.edu
Director, UCSF Center of Cerbrovascular
Phone: 323-361-6564
Research James P. Livingston Professor
Email: aiwilliams@chla.usc.edu Zimmerman, Regina PhD
and Vice-Chair, Department of
Email: rzimmerm@health.nyc.gov
Williams, Thomas N. MD, MPH Anesthesia and Perioperative Care
Centre for Geographic Medicine Professor of Neurological Surgery and Zipursky, Alvin MD, FRCP
Research, Kilifi, Kenya Neurology Chair, Programme for Global Paediatric
Email: twilliams@kilifi.kemri-wellcome. Email: youngw@anesthesia.ucsf.edu Research, Department of Pediatrics,
org Hospital for Sick Children
Young, Guy MD
555 University Ave, Toronto, ON
Williams, Tom MD, MPH Director, Hemostasis and Thrombosis
M5G1X8, Canada
Wellcome Trust Senior Fellow & Reader Center, University of Southern California
Phone: 416-813-8762
in Clinical Tropical Medicine, Kenya & 4650 Sunset Blvd
Email: alvin.zipursky@sickkids.ca
University of Oxford Mail stop 54, Los Angeles, CA 90027
Phone: +254-733- 41-1021 Phone: 323-361-5507
Email: tom.n.williams@gmail.com Email: gyoung@chla.USC.edu
Wirth, Diane ANP-BC, CACP Young, William PhD

National Blood Clot Alliance, 120 White Manager, Newborn Screening Follow-
Plains Road, Suite 100 Tarrytown, NY up Program, Michigan Department of
10591 Community Health
Phone: 914-220-5040 201 Townsend Street, Lansing, MI 48909
Email: dwirth@gmh.edu Phone: 517-335-8938
Email: youngw@michigan.gov
Woods, Ayana MPH
Director of Education, NHF, 116 West Younger, Novie PhD
32nd St. 11th Fl, New York, NY 10001 Epidemiology Research Unit, Tropical
Phone: 212-328-3705 Medicine Research Institute, University
Email: awoods@hemophilia.org of the West Indies, Mona Campus,
Kingston 7, Jamaica (W.I.)
Wolfson, Julie MD, MSHS Phone: 876 977 6151-2
Assistant Professor of Pediatrics, Dept of Email: novie.younger@uwimona.edu.jm
Pediatrics, City of Hope
1500 E Duarte Rd, Duarte, CA 91010 Yusuf, Hussain MD, MPH
Email: jwolfson@coh.org Epidemiologist, Division of Blood
and Prevention
1600 Clifton Road, MS-E64, Atlanta, GA
30333
Phone: 404-498-3937
Email: hay0@cdc.gov
Notes:
149
Notes:
150
Notes:
151
Notes:
152
153
For more information contact:
Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities
1600 Clifton Road MS E-87
Atlanta, GA 30333
800-CDC-INFO (800-232-4636)
TTY: (888) 232-6348
24 Hours/Every Day
cdcinfo@cdc.gov
For post-conference updates and more information about this conference,

visit the conference website:
www.blooddisordersconferences.com
154

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The Second National Conference on Blood

Disorders in Public Health

National Center on Birth Defects and Developmental Disabilities

U.S. Department of Health and Human Services

Health Resources and Services Administration (HRSA):

National Institutes of Health (NIH):

National Heart Lung and Blood Institute

National Professional Organizations

American Society of Hematology (ASH)

American Society of Pediatric Hematology / Oncology (ASPHO)

2 The Second National Conference on Blood Disorders in Public Health: 2012

Abstracts and Session Summaries 42

Upcoming Conference Preview 133

Index of Authors, Coauthors, Invited Speakers, and Moderators 134

On behalf of the Planning Committee and Conference Co-Sponsors welcome to the

Hani Atrash MD, MPH Coleen Boyle PhD, MSHyg

4 The Second National Conference on Blood Disorders in Public Health: 2012

Non-Federal Partner Organizations

Health Resources and Services Administration (HRSA)

Internal Planning Committee:

Christopher S. Parker (Co-Chair), DBD Meredith Pyle, DBD

Sheree Boulet, DBD Nimia Reyes, DBD

Brandi Cooke, DBD Cynthia Sayers, DBD

Melissa Creary, DBD Gretchen Simmons, DBD

Barbara Goldston, DBD Mike Soucie, DBD

Scott Grosse, DBD Cindy Su, DBD

Fiona Kelly, DBD

External Planning Committee:

Committee Co-Chair: Christopher Parker,

Committee Co-Chair: Hani K. Atrash, Division

6 The Second National Conference on Blood Disorders in Public Health: 2012

Federal Partner Representatives:

Marcus Plescia, Division of Cancer Kathryn McLaughlin, Health Resources and

Wanda Barfield, Lorraine Brown, Health Resources and Services

Michele Lloyd-Puryear, Health Resources and

Subject Matter Experts:

Kwaku Ohene Frempong,

Partner Organization Representatives:

8 The Second National Conference on Blood Disorders in Public Health: 2012

10 The Second National Conference on Blood Disorders in Public Health: 2012

Opening Plenary: Translating Science Into Action 9:00-10:30 AM

12 The Second National Conference on Blood Disorders in Public Health: 2012

Luncheon Plenary 12:30-2:00 PM

14 The Second National Conference on Blood Disorders in Public Health: 2012

Tuesday, March 13, 2012

16 The Second National Conference on Blood Disorders in Public Health: 2012

Luncheon Plenary 12:00-1:30 PM

18 The Second National Conference on Blood Disorders in Public Health: 2012

Wednesday, March 14, 2012

20 The Second National Conference on Blood Disorders in Public Health: 2012

Stephan Moll MD is Associate Professor of Medicine in the Division of Hematology-Oncology at the

Closing Plenary: The Future of the Blood Disorders Workforce 10:00-11:30 AM

Lawrence A. Solberg, Jr. Ph.D., M.D. is a hematologist in the Division of Hematology-Oncology at

22 The Second National Conference on Blood Disorders in Public Health: 2012

George R. Buchanan MD is Professor of Pediatrics at The University of Texas Southwestern Medical

24 The Second National Conference on Blood Disorders in Public Health: 2012

12:30 PM – 2:00 PM Luncheon Plenary Grand Ballroom

3:30 PM – 4:00 PM Networking Break Prefunction Area

5:00 PM – 5:30 PM Networking Break Prefunction Area

Day 2, Tuesday, March 13, 2012

12:00 PM – 1:30 PM Luncheon Plenary Grand Ballroom

3:00 PM – 3:30 PM Networking Break Prefunction Area

26 The Second National Conference on Blood Disorders in Public Health: 2012

4:25 PM – 4:35 PM Transition Break