Tuesday, May 20, 2025
5/20/2025
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.
HHS’ Tracking Accountability in Government Grants System (TAGGS) website provides access to detailed descriptions of grants, loans, aggregated direct payments and other types of financial assistance awarded by the HHS Operating Divisions (OPDIVs) and the Office of the Secretary Staff Divisions (STAFFDIVs).