Sickle Cell Disease (SCD) the most common inherited blood disorder in the U.S., is estimated to affect 90,000 to 100,000 Americans. Major complications of SCD include anemia, debilitating pain, infection, stroke, and organ damage.
As of today, there is no national surveillance of SCD and as a result, there are large gaps in understanding the natural course of the disease and how it affects each patient. There is also a lack of consistent scientific data to facilitate informed decision-making that could enable significant health improvements in the SCD community.
Since 2015, CDC https://www.cdc.gov has managed the “Sickle Cell Data Collection (SCDC) program, a state-wide population-based surveillance system in two states. The 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 from the SCDC program enable stakeholders to know how gaps can be addressed through policy changes, improved healthcare practices, and new treatments. The data available from the SCDC program has enabled new SCD clinics to open, educated healthcare providers, developed state policies related to healthcare for SCD, and enhanced federally-funded activities across HHS.
CDC plans to fund up to 5 recipients for a three year period of performance with estimated total program funding to be $3,000,000 to use to implement a state-wide SCD surveillance system. The forecasted grant funding activities include surveillance team engagement, data collection, annual reporting of aggregate level data, plus analyzing SCD surveillance data, and then disseminating the results.
The results of the funding would improve and expand the current SCDC efforts by increasing the number of states that would be able to implement the program. Since each state has a unique demographic makeup and distinct healthcare policies and challenges related to access to care, this will help the outcomes of individuals with SCD.
Eligible applicants for the funding can include nonprofits, universities, for profit organization other than small businesses, small businesses, state, county and city governments, Native American tribal governments, and special district governments.
Go to https://www.grants.gov/web/grants/search-grants.html for information on the CDC grant opportunity forecast estimated for release February 4, 2020 titled “Sickle Cell Data Collection Program”, released by the Centers for Disease Control (NCBDDD). The estimated application due date is May 12, 2020 with the estimated award data to be August 31, 2020.