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The Sickle Cell Disease Regional Quality Care Program (SoRCE-Q)

Award Number: U2F55881
ORGANIZATION: MATERNAL AND CHILD HEALTH BUREAU
OPDIV: HRSA
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: DEMONSTRATION
PERIOD OF PERFORMANCE START DATE: 09/01/2026
PERIOD OF PERFORMANCE END DATE: 08/31/2030

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The Sickle Cell Disease Regional Quality Care Program (SoRCE-Q) - The quality of care for people living with sickle cell disease (SCD) is highly variable despite the availability of evidence-based guidelines and multiple disease-modifying therapies. Universal newborn screening in the United States successfully identifies almost all infants born with SCD but has been insufficient to ensure ongoing lifespan care. While children with SCD often have access to SCD providers, some children stop SCD care prior to transition age and many affected adults are unable to identify a SCD specialist or primary care. Barriers to high-quality care include insufficient insurance coverage, limited numbers of adult-focused hematologists and primary care physicians with expertise in SCD, and transportation issues limiting access to those providers. In attempt to alleviate this situation, the National Heart, Lung, and Blood Institute (NHLBI) published an Evidence-Based Management of Sickle Cell Disease Expert Panel Report in 2014, and the American Society of Hematology published guidelines specific to organ complications, transfusion therapy, pain management and neurologic complications in SCD. In addition, new therapies have been approved for the treatment of SCD but are limited in their dissemination to people with SCD. The over-arching goal of the Sickle Cell Disease Regional Care Excellence (SoRCE) Program is to improve comprehensive care services and outcomes in including quality of life for people living with SCD in the United States and their families by using a regional coordinating hub (RCH) and clinical-community spoke (CCS) infrastructure. The purpose of this project is to: 1) Increase the number of comprehensive sickle cell centers 2). Train more providers in evidence-based care for individuals with SCD using the NHLBI and ASH guidelines 3) Ensure rigorous data collection to enhance continuous quality improvement (CQI) in SCD 4). Engage in quality CQI in SCD 5). Use tele-mentoring to increase access to care for people living with SCD and 6). Work with HRSA-funded SCD newborn screening and follow-up program recipients and with community-based organizations to identify methods to increase care affiliation for individuals with SCD. We propose to achieve these goals through the continuation of the EMBRACE (Education and Mentoring to BRing Access to CarE) SCD Network SE, a regional collaborative initiated in 2017 in the southeastern United States. There are performance sites in every state within our HRSA region including Augusta University, Emory, and the Sickle Cell Foundation of Georgia in Georgia, Duke, Eastern Carolina University, Atrium Health and Piedmont Health Services and Sickle Agency in North Carolina, and Prisma Health Midlands and Upstate and the L.D. Barksdale Sickle Cell Foundation in South Carolina. Our strong central leadership team of Drs. Strouse (principal investigator) and Rothman, Oyedeji, and Kayle (co-investigators) have over 50 years of collective experience in providing and improving care for people living with SCD. EMBRACE SE leadership is committed to partnership with the CCS and other SCD organizations to develop a regional SCD action plan. We will enhance access to care using a network of SCD comprehensive care centers and meet the goals of SoRCE program through efficient data collection, CQI, and rigorous program assessment. Our overarching goal is to improve access to high-quality care for people with living with SCD throughout the Southeast United States through a collaborative model in coordination with the other RCHs, southeastern CCS, and the SCD National Coordinating Center.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2026 ( Subtotal = $950,000 )
2026	2026	DUKE UNIVERSITY	2200 W MAIN ST	DURHAM	NC	27705	DURHAM	USA	Sickle Cell Treatment Demonstration Program	00	1	9/14/2026	NEW	$950,000
														Subtotal = $950,000

Grand Total All Awards = $950,000

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The Sickle Cell Disease Regional Quality Care Program (SoRCE-Q)

Award Number: U2F55881

ORGANIZATION: MATERNAL AND CHILD HEALTH BUREAU

OPDIV: HRSA

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: DEMONSTRATION

PERIOD OF PERFORMANCE START DATE: 09/01/2026

PERIOD OF PERFORMANCE END DATE: 08/31/2030

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