Sickle Cell Data Collection Program | CDC RFA DD20 2003

Opportunity Information: Apply for CDC RFA DD20 2003

The Sickle Cell Data Collection Program is a CDC funding opportunity designed to expand state-based surveillance of sickle cell disease (SCD), the most common inherited blood disorder in the United States and one that affects an estimated 90,000 to 100,000 people nationwide. SCD can lead to serious, life-altering complications such as chronic anemia, severe and recurrent pain episodes, infections, stroke, and progressive organ damage. CDC highlights that many poor outcomes are linked to limited access to comprehensive care, especially as patients transition into adulthood, along with historically limited treatment options. A central problem the program is trying to solve is that the United States does not have a national SCD surveillance system, which leaves major gaps in understanding how the disease progresses over time, why experiences vary so widely between patients, and what care patterns and policy decisions might most effectively improve outcomes.

This grant opportunity supports the creation or strengthening of a statewide, population-based surveillance system that can reliably identify individuals living with SCD and collect standardized information about their clinical history and health care use. CDC has operated the Sickle Cell Data Collection (SCDC) program since 2015 in two states, and those early efforts have demonstrated practical value: states have used the resulting data to pinpoint where diagnosis, treatment, and access to care are falling short, and then translate findings into real-world action. The notice describes examples of impact such as the opening of new SCD clinics, improved education and awareness among health care providers, state-level policy changes related to SCD care, and better alignment with other federally funded efforts across HHS. The overall goal of expanding to more states is to build a clearer, more representative picture of SCD across the country, recognizing that outcomes are shaped by each state s demographics, health care systems, insurance and Medicaid policies, and local barriers to specialized care.

The funding is offered as a cooperative agreement through the Department of Health and Human Services, Centers for Disease Control and Prevention, specifically within CDC s National Center on Birth Defects and Developmental Disabilities (NCBDDD). The opportunity number is CDC RFA DD20 2003 and it is categorized as discretionary health funding (CFDA 93.080). CDC planned a three-year period of performance and indicated an intent to fund up to five recipients under this competition, with an award ceiling of $500,000. The source listing also notes an expectation of six awards, which can happen when final program decisions adjust based on available funds, application quality, or how CDC structures awards; applicants typically should rely on the NOFO language and any amendments for the most authoritative count.

Program work is structured around two components. The Core Component is required for all applicants and focuses on the operational foundation of surveillance: building and engaging a surveillance team, carrying out data collection, and producing annual reporting of aggregate-level data. In practice, that means establishing the partnerships, data use arrangements, and processes needed to routinely bring together information that can identify people with SCD and describe their health experiences in a consistent way at the state level. The Supplemental Component is optional and can be requested within the same application; it emphasizes deeper analysis of the collected surveillance data and active dissemination of results. That second piece is aimed at ensuring the data do not just sit in a database but instead are translated into findings that can guide stakeholders, including clinicians, public health agencies, policymakers, and community organizations, toward specific improvements in care delivery and access.

Eligibility is broad and includes many types of entities, such as state, county, and local governments; public and private institutions of higher education; federally recognized tribal governments and other tribal organizations; public housing authorities; nonprofit organizations with or without 501(c)(3) status; for-profit organizations (other than small businesses) as well as small businesses; and other entities as clarified in the NOFO. This broad eligibility reflects the reality that statewide surveillance infrastructure can be housed in different places depending on the state, such as a health department, a university partner, or another organization positioned to manage complex multi-source data and coordinate with clinical and community partners.

By expanding SCDC into additional states, CDC s intent is to strengthen the national evidence base on SCD without waiting for a single, fully centralized national surveillance system to emerge. The expected payoff is better measurement and understanding of SCD incidence and prevalence, demographics, patterns of health care utilization, and mortality, along with clearer identification of where systems fail patients and where interventions can make the biggest difference. Over time, the program is meant to support more informed decision-making, stronger policy development, and more targeted improvements in clinical practice and service delivery for people living with sickle cell disease.

• The Department of Health and Human Services, Centers for Disease Control - NCBDDD in the health sector is offering a public funding opportunity titled "Sickle Cell Data Collection Program" and is now available to receive applicants.
• Interested and eligible applicants and submit their applications by referencing the CFDA number(s): 93.080.
• This funding opportunity was created on Mar 04, 2020.
• Applicants must submit their applications by May 11, 2020 Electronically submitted applications must be submitted no later than 1159 p.m., ET, on the listed application due date.. (Agency may still review applications by suitable applicants for the remaining/unused allocated funding in 2026.)
• Each selected applicant is eligible to receive up to $500,000.00 in funding.
• The number of recipients for this funding is limited to 6 candidate(s).
• Eligible applicants include: State governments, County governments, City or township governments, Special district governments, Independent school districts, Public and State controlled institutions of higher education, Native American tribal governments (Federally recognized), Public housing authorities/Indian housing authorities, Native American tribal organizations (other than Federally recognized tribal governments), Nonprofits having a 501(c)(3) status with the IRS, other than institutions of higher education, Nonprofits that do not have a 501(c)(3) status with the IRS, other than institutions of higher education, Private institutions of higher education, For profit organizations other than small businesses, Small businesses, Others (see text field entitled Additional Information on Eligibility for clarification), Unrestricted (i.e., open to any type of entity above), subject to any clarification in text field entitled Additional Information on Eligibility.

Apply for CDC RFA DD20 2003

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