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. 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, including how vulnerable populations seek and receive SCD care. The intent of the Sickle Cell Data Collection (SCDC) program is to inform decisions and policies that may lead to significant improvements in the SCD community, a community that continues to be impacted by racism, bias, and prejudice. The efforts of the SCDC program have led to changes in health care policy and increased access to health care services for SCD at both the local and state level.  SCDC data have informed the location of new SCD clinics, based on the number of people with SCD compared to the number of SCD health care specialists.  They have also been used to identify people with SCD who are eligible for newly expanded Medicaid services.  Additional examples of the translation of SCDC data into actions that improve and extend the lives of people with SCD, including actions reaching further than health care, alone, are expected as the program continues to expand.  Through this Notice of Funding Opportunity (NOFO), CDC plans to fund recipients for a five-year period of performance to implement the SCDC program. All recipients will adhere to standardized methods for implementing SCDC, develop strategies for effective communication with stakeholders from the SCD community, and produce peer-reviewed publications and other educational materials based on SCDC findings.  They will also establish or enhance their partner collaborations and explore paths by which the data may be used to inform policies beyond health care, such as those concerning transportation, education, housing, or employment, that impact individuals with SCD. There will be two components, component A (implementation and technical assistance) and component B (capacity building and implementation), with the expectation of a close, working one-on-one collaboration between each component B recipient and a component A recipient.  This NOFO allows recipients to gather unique data and conduct in-depth analyses to inform their SCD efforts and to compare and contrast SCD-related health care and health outcomes across states and across population groups.  Each state has a unique demographic makeup, health disparities, 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.

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