Capacity Building for Sickle Cell Disease Surveillance

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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 critical 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 education of health care providers, and the enhancement of federally-funded activities across HHS. Through this NOFO, CDC plans to fund up to seven recipients for a one-year period of performance to participate in a rigorous course of activities to build capacity for a state-wide SCD surveillance system. CDC plans to fund up to five recipients to engage stakeholders, participate in web-based learning sessions, assess database linkages and infrastructure, and report out on all required capacity building SCD surveillance activities (Component A). CDC also plans to fund up to two recipients to provide technical assistance (Component B). The technical assistance will be provided through a series of web-based learning sessions, in-person meetings, in-state and cross-state relationship building, and ongoing communications to create the partnerships, data sharing agreements, and data storage system needed to successfully implement an SCD surveillance system. Applicants can apply for only Component A or Component B. This NOFO will improve and expand the current SCDC efforts by building the capacity of additional 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. By building capacity for additional states to implement SCDC, this NOFO builds the framework and a road map for 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. Furthermore, the framework should have future utility for other parties interested in expanding their SCD surveillance.

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