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North Carolina Sickle Cell Data Collection Program

Award Number: NU58DD000032
ORGANIZATION: NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES (NCBDDD)
OPDIV: CDC
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: HEALTH SERVICES
PERIOD OF PERFORMANCE START DATE: 09/30/2023
PERIOD OF PERFORMANCE END DATE: 09/29/2028

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North Carolina Sickle Cell Data Collection Program - Due to the lack of national surveillance data, the precise incidence and prevalence of sickle cell disease (SCD) in the United States are unknown. There is an urgent need for state-based surveillance programs in multiple states to have more accurate incidence and prevalence counts of SCD and have a better understanding of the geographic distribution, health care needs, and social determinants of health (SDoH) that affect outcomes among the SCD population. The purposes of this component A application are to (1) enhance North Carolina Sickle Cell Data Collection (NC SCDC), a high-quality state-wide, population based SCD surveillance program and (2) generate and disseminate surveillance findings that will inform decisions and policies for SCD, ultimately improving the lives of people with SCD in NC and nationally. NC established the NC SCDC program, a state-wide, population-based surveillance system through two Centers for Disease Control and Prevention (CDC) awards in 2019 and 2020. To date, the NC SCDC data assets include state-wide, all-payer emergency department (ED) and hospital discharge, NC Medicaid claims, newborn screening records, vital records, and electronic health records. NC is well poised to maintain and enhance a SCD surveillance program because of a relatively large SCD population, existing state SCD infrastructure including state-level databases, our team’s expertise in SCD surveillance, and strong collaborations among individuals living with SCD, partners, and stakeholders. NC SCDC allows for the collection and analysis of cross-sector data to accurately describe the epidemiology of SCD, identify population healthcare needs, and describe health inequities based on geographic location, socioeconomic differences, access to health insurance, and other SDOH. These findings will inform health policy and the development of tailored interventions and programs to reduce health disparities in NC.


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 = $500,000 )
2026	2026	NORTH CAROLINA DEPARTMENT OF HEALTH & HUMAN SERVICES	1915 Health Services Way	RALEIGH	NC	27607	WAKE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	4	8/4/2026	NON-COMPETING CONTINUATION	$500,000
2026	2025	NORTH CAROLINA DEPARTMENT OF HEALTH & HUMAN SERVICES	1915 Health Services Way	RALEIGH	NC	27607	WAKE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	4	8/4/2026	NON-COMPETING CONTINUATION	$0
2026	2024	NORTH CAROLINA DEPARTMENT OF HEALTH & HUMAN SERVICES	1915 Health Services Way	RALEIGH	NC	27607	WAKE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	4	8/4/2026	NON-COMPETING CONTINUATION	$0
2026	2023	NORTH CAROLINA DEPARTMENT OF HEALTH & HUMAN SERVICES	1915 Health Services Way	RALEIGH	NC	27607	WAKE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	4	8/4/2026	NON-COMPETING CONTINUATION	$0
														Subtotal = $500,000

Issue Date FY: 2025 ( Subtotal = $476,611 )
2025	2025	STATE OF NORTH CAROLINA DEPARTMENT OF HEALTH & HUMAN SERVICES	101 BLAIR DR	RALEIGH	NC	27603	WAKE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	3	9/24/2025	NON-COMPETING CONTINUATION	$476,611
2025	2024	STATE OF NORTH CAROLINA DEPARTMENT OF HEALTH & HUMAN SERVICES	101 BLAIR DR	RALEIGH	NC	27603	WAKE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	3	9/24/2025	NON-COMPETING CONTINUATION	$0
2025	2023	STATE OF NORTH CAROLINA DEPARTMENT OF HEALTH & HUMAN SERVICES	101 BLAIR DR	RALEIGH	NC	27603	WAKE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	3	9/24/2025	NON-COMPETING CONTINUATION	$0
														Subtotal = $476,611

Issue Date FY: 2024 ( Subtotal = $476,611 )
2024	2024	STATE OF NORTH CAROLINA DEPARTMENT OF HEALTH & HUMAN SERVICES	101 BLAIR DR	RALEIGH	NC	27603	WAKE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	2	9/5/2024	NON-COMPETING CONTINUATION	$476,611
2024	2023	STATE OF NORTH CAROLINA DEPARTMENT OF HEALTH & HUMAN SERVICES	101 BLAIR DR	RALEIGH	NC	27603	WAKE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	2	9/5/2024	NON-COMPETING CONTINUATION	$0
														Subtotal = $476,611

Issue Date FY: 2023 ( Subtotal = $476,611 )
2023	2023	STATE OF NORTH CAROLINA DEPARTMENT OF HEALTH & HUMAN SERVICES	101 BLAIR DR	RALEIGH	NC	27603	WAKE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	1	9/14/2023	NEW	$476,611
														Subtotal = $476,611

Grand Total All Awards = $1,929,833

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North Carolina Sickle Cell Data Collection Program

Award Number: NU58DD000032

ORGANIZATION: NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES (NCBDDD)

OPDIV: CDC

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: HEALTH SERVICES

PERIOD OF PERFORMANCE START DATE: 09/30/2023

PERIOD OF PERFORMANCE END DATE: 09/29/2028

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