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Project Information

Project Information


Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action


Project Scope:

The Department of Health and Human Services (HHS), Office of Minority Health requests that the National Academies of Sciences, Engineering, and Medicine convene an ad hoc committee to develop a strategic plan and blueprint for addressing sickle cell disease (SCD) in the United States. In conducting its work, the committee will examine:

--the epidemiology, health outcomes, and societal factors associated with SCD and sickle cell trait (SCT), including serious complications of SCD such as stroke, kidney and heart problems, acute chest syndrome, and debilitating pain crises;

--current guidelines and best practices for the care of patients with SCD;

to the extent possible, the economic burden associated with SCD; and

--current federal, state, and local programs related to SCD and SCT, including screening, monitoring and surveillance, treatment and care programs, research, and others.

The committee will provide guidance on priorities for programs, policies, and research and make recommendations as appropriate, regarding:

--limitations and opportunities for developing national SCD patient registries and/or surveillance systems;

--barriers in the healthcare sector associated with SCD, including access to care, workforce development, pain management, and transitions from pediatric to adult care;

--needed innovations in research, particularly for curative treatments such as gene replacement/gene editing and increasing awareness and enrollment of SCD patients in clinical trials; and

--the expanded and optimal role of patient advocacy and community engagement groups.

Committee guidance should be formulated around strategic objectives (strategic plan) and action steps (blueprint).

Throughout all the deliberations, the committee will give consideration to ethical issues related to SCD.




Status: Current

PIN: HMD-BPH-18-12

Project Duration (months): 18 month(s)

RSO: Osei-Anto, Henrietta

Division(s):


Topic(s):

Health and Medicine



Geographic Focus:

Committee Membership

Committee Post Date: 01/25/2019

Gilda Barabino
Gilda Barabino, Ph.D., is the Dean and Berg Professor at The Grove School of Engineering at The City College of New York (CCNY). She has appointments in Biomedical Engineering, Chemical Engineering and the Sophie Davis School of Biomedical Education/CUNY School of Medicine. Previously, Dr. Barabino served as the Associate Chair for Graduate Studies and Professor in the Wallace H. Coulter Department of Biomedical Engineering and the Vice Provost for Academic Diversity at Georgia Tech and Emory University. Dr. Barabino’s laboratory focuses on vascular and orthopedic tissue engineering research. She also works to find novel therapeutic strategies that will improve the health of those who suffer from sickle cell disease and related complications. Dr. Barabino received her B.S. degree in Chemistry from Xavier University of Louisiana and her Ph.D. in Chemical Engineering from Rice University.
Mary C. Beach
Mary Catherine Beach, M.D., M.P.H., is a professor of medicine at the Johns Hopkins University School of Medicine. She holds a joint appointment in health, behavior and society at the Johns Hopkins Bloomberg School of Public Health. Dr. Beach’s scholarship about respect and relationships in healthcare encompasses both empirical and conceptual dimensions. Dr. Beach is currently conducting research on the theoretical foundations of respect and the impact of physician attitudes and patient-physician communication on patients in the primary care setting, in the treatment of HIV and substance abuse and in the treatment of sickle cell disease. Dr. Beach is on the editorial board for Patient Education and Counseling and on the Advisory Board for Communication in Medicine.
Lori E. Crosby
Lori E. Crosby, Psy.D, is a Professor of Pediatrics and a clinical psychologist. She is Co-Director of Innovations in Community Research and Co-Directs the Cincinnati Clinical Translational Science Award’s (CTSA) Community Engagement Core. Dr. Crosby’s research focuses on community engagement, self-management, quality improvement, sickle cell disease, health disparities, and patient centered outcomes and has been funded by the National Institutes of Health, Agency for Healthcare Research and Quality, and the Patient Centered Outcomes Research Institute. She is an elected Fellow of the American Psychological Association and a faculty member in the Department of Pediatrics at the University of Cincinnati (UC) College of Medicine, the Division of Behavioral Medicine at Cincinnati Children’s Hospital Medical Center, and the Department of Hematology/Oncology at UC Health (adjunct). Dr. Crosby previously served as a member of a National, Heart, Lung and Blood Institute Workgroup that developed 2020 Healthy People objectives for individuals affected by sickle cell disease and an American Psychological Association on Advancing Practice. Dr. Crosby received her Psy.D. from Wright State University and completed her pediatric residency/internship at Cincinnati Children’s Hospital Medical Center.


Amy Dawson
Amy Dawson, M.D, M.P.H is Associate Director and Medical Director at the Fort Wayne Medical Education Program, a family medicine residency program dually-accredited by both the Accreditation Council for Graduate Medical Education (ACGME) and the American Osteopathic Association (AOA). After earning her M.D. degree from The Ohio State University, Dr. Dawson trained in family medicine at the Fort Wayne Medical Education Program. Following her training she spent 3 years in private practice at Brooklyn Medical Associates, followed by four and half years as Medical Director of Matthew 25 Health and Dental, and almost four years practicing in Quito, Ecuador. In July of 2012, she moved back to Indiana and joined the faculty of the Fort Wayne Medical Education Program as medical director of the Family Medicine Clinic, training new family medicine doctors to provide great healthcare now and in the future.
Michael R. DeBaun
Michael R. DeBaun, M.D., M.P.H., is a Professor of Pediatrics and Medicine, Vice Chair for Clinical and Translational Research in Pediatrics, J.C. Peterson Endowed Chair in Pediatrics, the Director of the Vanderbilt-Meharry Center for Excellence in Sickle Cell Disease and a practicing hematologist. The Center is one of the first in the country to establish a medical home care model for children and adults with sickle cell disease in a community health center. Dr. DeBaun was the primary physician author of the Sickle Cell Treatment Act, signed by President Bush into law on Oct. 22, 2004 Title VII, creating regional networks for enhanced services for children and adults with sickle cell disease. For over 20 years, his international efforts in sickle cell disease have focused on epidemiology, cognitive impact, clinical significance and strategies for preventing strokes and silent strokes in children and adults. Dr. DeBaun received his M.D. and Masters in Health Services Research from Stanford University School of Medicine and his M.P.H. from Johns Hopkins University School of Hygiene and Public Health. Dr. DeBaun is a member of the National Academy of Medicine.
Darius Lakdawalla
Darius Lakdawalla, Ph.D., is the Quintiles Chair in Pharmaceutical Development and Regulatory Innovation at the University of Southern California (USC), where he sits on the faculties of the School of Pharmacy and the Sol Price School of Public Policy. He also serves as the Director of Research at the Leonard D. Schaffer Center for Health Policy and Economics at USC, one of the nation’s premier health policy research centers. Dr. Lakdawalla is currently a Research Associate at the National Bureau of Economic Research and serves as an Associate Editor for the Review of Economics and Statistics, the Journal of Health Economics and the American Journal of Health Economics. He is considered an expert in the field of health policy and economics, with his research focusing primarily on the economics of risks to health, the value and determinants of medical innovation, the economics of health insurance markets, and the industrial organization of healthcare markets. Dr. Lakdawalla received his Ph.D. in economics from the University of Chicago and his B.A. in mathematics and philosophy from Amherst College.
Jonathan D. Moreno
Jonathan D. Moreno, Ph.D., is a David and Lyn Silfen University Professor of Ethics at the University of Pennsylvania in the Department of Medical Ethics and Health Policy. He is a Senior Fellow at the Center for American Progress in Washington, D.C. and the author of several books on ethics. Dr. Moreno received his Ph.D. from Washington University and his B.A. from Hofstra University. Dr. Moreno is a member of the National Academy of Medicine.
Ifeyinwa Osunkwo
Ifeyinwa (Ify) Osunkwo, M.D., MPH, is the Director for the Sickle Cell Disease Enterprise at Atrium Health’s Levine Cancer Institute serving approximately 1400 adults and 400 children living with sickle cell disease. She is a Clinical Associate Professor of Medicine at the University of North Carolina at Chapel Hill and a lifespan hematologist who specialized in health services outcomes in sickle cell disease with a specific focus on transition from pediatrics to adult care chronic pain, health literacy and patient engagement. She is also an implementation science researcher with a specific focus on sickle cell disease. Dr. Osunkwo has over 25 years of experience in clinical management and population health for sickle cell disease as it relates to chronic disease management, quality improvement and program development. She is a PI on the Education and Mentoring to Bring Access to CarE (EMBRACE) Network - a regional collaborative focused on increasing access to care for individuals living with sickle cell disease in the southeast USA and leads the Sickle Cell Trevor Thompson Transition Project (SST3P-UP) a multicenter study to comparative the effectiveness of a structured education based transition program with or without peer mentoring on transition outcomes among emerging adults with sickle cell disease. Dr. Osunkwo serves on the board of the Sickle Cell Adult Providers Network (SCAPN) and on several committees for the American Society of Hematology (ASH) namely the ASH Communications Committee, The ASH Cardiopulmonary and Renal Guidelines subcommittee, and on the editorial board for The Hematologist and Hematology News. Dr. Osunkwo received her M.D. from the University of Nigeria, and her M.P.H. from Johns Hopkins Bloomberg School of Public Health. She completed he clinical training at University of Medicine and Dentistry of New Jersey (Pediatric Residency) and Columbia University (Fellowship in Pediatric Hematology/Oncology and Bone Marrow Transplant).
Susan Paulukonis
Susan Paulukonis, M.P.H., M.A. is the Program Director of the California Rare Disease Surveillance Program at Tracking California, a partnership between the Public Health Institute and the California Department of Public Health. Her expertise is in using population surveillance methodologies to gather information on those affected by rare, non-reportable diseases, determining the incidence and prevalence of such disorders and their outcomes and impact. This work also identifies and highlights those resources that may are needed to improve quality of life for affected populations. The primary focus of her work is sickle cell disease, but the program has also conducted population surveillance in amyotrophic lateral sclerosis, Parkinson's disease, and human health impacts of exposure to cyanotoxins. Susan was responsible for management of California's Registry and Surveillance System for Hemoglobinopathies (RuSH) and Public Health, Epidemiology, Research and Surveillance in Hemoglobinopathies (PHRESH) programs prior to her direction of the state's Sickle Cell Data Collection Program. Susan Paulukonis received her M.P.H. from the University of California, Berkeley, and her M.A. and B.A. from San Francisco State University.
Kim Smith-Whitley
Kim Smith-Whitley, M.D., is the Director of the Comprehensive Sickle Cell Center, Clinical Director of the Division of Hematology, and Professor of Pediatrics at the Children’s Hospital of Philadelphia. She holds the Elias Schwartz, M.D., Endowed Chair in Hematology. Her research focus is on sickle cell disease-related complications particularly infections and pulmonary issues as well as improving long-term therapies and the transition process from pediatric- to adult-focused care. Through multiple projects and advocacy efforts she hopes to increase access to high quality care and foster the development of new therapeutics including curative therapies for children and adults with sickle cell disease. She is the initiator of two programs at Children’s Hospital of Philadelphia: a short-stay Hematology Acute Care Unit and The Blue Tie Tag program to recruit blood donors for pediatric transfusions. Dr. Smith-Whitley received her M.D. from George Washington University School of Medicine then completed residency training at Children’s National Hospital and pediatric hematology-oncology fellowship at Children’s Hospital of Philadelphia.

Events



Location:

National Academy of Sciences Building
2101 Constitution Ave NW, Washington, DC 20418
Event Type :  
Meeting

Description :   

The National Academies of Sciences, Engineering, and Medicine Committee on Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action study will hold its first open session as part of information gathering activities. The session will feature invited presentations from several experts on the following topics: 

  • The official charge to the committee from the study sponsor, the Office of the Assistant Secretary of Health and the Office of Minority Health.
  • The history of sickle cell disease in the U.S., underscoring the sociopolitical factors that have shaped the evolution of the disease.
  • An overview of the epidemiology of sickle cell disease in the U.S.
  • A discussion of clinical complications associated with the disease and approaches to care delivery and management for patients with sickle cell disease.
  • A discussion about the role of advocacy in improving care and outcomes for patients with sickle cell disease and their families.
  • An overview of current and innovative therapeutic approaches for sickle cell disease.

The session will be accessible to the public via live webcast and in-person attendance (limited seating). Please register to attend the public session in-person or via live webcast.

More information about this session, including agenda and speakers will be forthcoming. 





If you would like to attend the sessions of this event that are open to the public or need more information please contact

Contact Name:  Pam McCray
Contact Email:  SickleCellStudy@nas.edu
Contact Phone:  -

Supporting File(s)
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Is it a Closed Session Event?
Some sessions are open and some sessions are closed

Publication(s) resulting from the event:

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Publications

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Publications

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