Sickle Cell Data Collection Program

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Sickle cell disease (SCD), estimated to affect 90,000 to 100,000 Americans, is the most common inherited blood disorder in the United States. Major complications of SCD include anemia, debilitating pain, infection, stroke, and organ damage. Poor health outcomes may be a result of limited or no access to comprehensive care, especially during their adult years, and limited treatment options. There is no national surveillance of SCD. Consequently, there are large gaps in our current understanding of the natural course of the disease and its variable manifestations from one patient to the next. There is also a lack of consistent scientific data to facilitate informed decision-making that may lead to significant health improvements in the SCD community. A population-based surveillance system will allow for the identification of individuals with SCD and the standardized collection of information about their clinical history. Since 2015, CDC has managed the Sickle Cell Data Collection (SCDC) program, a state wide, population-based surveillance system, in two states (https://www.cdc.gov/ncbddd/hemoglobinopathies/scdc.html). SCDC allows these states to analyze the health information of individuals with SCD and identify crucial gaps in their diagnosis, treatment, and access to care. The results of these analyses inform stakeholders about how these gaps can be filled through policy changes, improved health care practices, and new treatments. SCDC data have played a role in the opening of new SCD clinics, the educations of health care providers, state policies related to health care for SCD, and the enhancement of federally-funded activities across HHS. Through this NOFO, CDC plans to fund up to five recipients for a three-year period of performance to participate in the implementation of a state-wide SCD surveillance system. NOFO activities will include 1) surveillance team engagement, data collection, and annual reporting of aggregate level data (Core Component) and 2) analysis of SCD surveillance data and dissemination of results (Supplemental Component). Applicants must apply for the Core Component. Additionally, applicants can choose to apply for the Supplemental Component via a single application. This NOFO will improve and expand the current SCDC efforts by increasing the number of states to implement the program. Each state has a unique demographic makeup, distinct health care policies, and challenges related to access to care; all of these factors play a large role in the outcomes and experiences of individuals with SCD. This NOFO will enhance understanding of the incidence, prevalence, demographics, health care utilization patterns, and mortality of SCD in the United States.

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