Topic: Sickle Cell Disease

Projects

Sickle Cell Disease Treatment Demonstration Program

Status: Active

WHAT: As the National Coordinating Center for the Sickle Cell Disease Treatment Demonstration Program (SCDTDP), we work with four regional teams from across the country to increase the number of providers treating persons for sickle cell disease (SCD) or sickle cell related issues, increase the number of providers prescribing disease modifying therapies, such as hydroxyurea, and increase the number of patients receivingt regular care from providers knowledgeable about treating SCD.

WHO: Four regional grantee teams that cover diverse HRSA-designated regions across the country. Partnerships include sickle cell treatment centers, federally qualified health centers, community based organizations, parents and patients.

WHEN: September 2014 to September 2017

FUNDER: The project is funded by the Health Resources and Services Administration.

OUR ROLE: Gather data from and evaluate the performance of SCDTDP grantees in addressing the goals of the program. Deliver a comprehensive report to congress that outlines results of the project, develop a model protocol that outlines strategies for improving sickle cell care, and establish a compendium of tools and materials developed by teams.

If you are interested in learning more about this project, please email: SCDTDP2014-2017@nichq.org

WHAT IS SICKLE CELL DISEASE?

Sickle cell disease (SCD) is an inherited red blood cell disorder that affects around 100,000 people in the United States, largely individuals of African ancestry, but increasingly in Latino and other populations as well. Individuals with SCD experience painful episodes when their red blood cells morph into a crescent (“sickle”) shape and get stuck in small blood vessels. This blockage inhibits blood flow, which deprives tissues of oxygen and causes severe pain and tissue damage. SCD is characterized by chronic anemia, unpredictable episodes of pain and end-organ damage, and early mortality.

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