Capacity Building for Sickle Cell Disease Surveillance | CDC RFA DD19 1906

Opportunity Information: Apply for CDC RFA DD19 1906

The Capacity Building for Sickle Cell Disease Surveillance opportunity is a CDC cooperative agreement designed to help expand state-level surveillance for sickle cell disease (SCD) and strengthen the data foundation needed to improve care and outcomes. SCD affects an estimated 90,000 to 100,000 people in the United States and can lead to serious, lifelong complications such as chronic anemia, severe pain episodes, infections, stroke, and progressive organ damage. A key problem driving this funding is that there is no national SCD surveillance system, which leaves major gaps in understanding how the disease progresses across a person s lifespan, why symptoms and complications vary so much between individuals, and where the health system is failing to provide timely diagnosis, consistent treatment, and access to comprehensive care, especially for adults.

The grant builds directly on the CDC s existing Sickle Cell Data Collection (SCDC) program, which began in 2015 as a statewide, population-based surveillance effort operating in two states. The SCDC approach focuses on identifying people with SCD at the population level and then standardizing the collection of information about their clinical history by linking and analyzing relevant datasets. In the states that already run SCDC, the resulting analyses have been used to pinpoint gaps in diagnosis, treatment patterns, and access to specialized services. Those findings have helped inform practical actions like opening new SCD clinics, educating health care providers, shaping policy discussions, and strengthening coordination across federally funded health activities within HHS. This funding opportunity aims to extend that kind of capacity to additional states so more jurisdictions can generate comparable, decision-ready data.

CDC planned to make up to seven awards for a one-year period of performance, with an award ceiling of $300,000. Rather than funding full surveillance implementation immediately everywhere, the emphasis is on a structured, rigorous capacity-building process that prepares recipients to stand up or expand a statewide SCD surveillance system. The logic is that states differ in demographics, health care delivery systems, insurance landscapes, data access rules, and barriers to care, so each state needs tailored groundwork to establish the partnerships, legal agreements, technical infrastructure, and operational workflows required for sustainable surveillance. By investing in that groundwork across multiple states, CDC also creates a broader framework that supports cross-state comparisons of SCD health outcomes and health care utilization, while offering a road map that others can use later to expand surveillance further.

The NOFO is split into two separate components, and applicants may apply to only one. Component A is intended for states or entities that want to build their own capacity to run statewide SCD surveillance. Under this component, CDC expected to fund up to five recipients to carry out core readiness activities such as engaging stakeholders, participating in web-based learning sessions, assessing potential database linkages and technical infrastructure, and reporting on required capacity-building deliverables. In practical terms, Component A is about assembling the right partners (for example, public health agencies, Medicaid programs, hospital systems, clinics, laboratories, newborn screening programs, community and patient organizations), mapping what data sources exist, determining how those sources can be linked to identify individuals with SCD and describe their care experience, and documenting what is needed to operate a standardized, population-based approach.

Component B is geared toward entities positioned to provide technical assistance to others rather than building a single state system. CDC expected to fund up to two recipients for this role. The technical assistance model described includes web-based learning sessions, in-person meetings, relationship building within and across states, and ongoing communication to help participating states develop the practical building blocks of surveillance. Those building blocks include establishing partnerships, negotiating data sharing agreements, and setting up appropriate data storage and management systems. Put simply, Component B recipients function as capacity multipliers, helping multiple jurisdictions navigate common obstacles like governance, privacy and security expectations, legal permissions, data standardization, and the mechanics of linking datasets into a usable surveillance resource.

The eligible applicant pool is broad and includes various levels of government (state, county, city or township, special districts), public and private institutions of higher education, federally recognized tribal governments and certain tribal organizations, public housing authorities, nonprofit organizations with or without 501(c)(3) status, for-profit organizations (including small businesses), and other entities as clarified in the opportunity. The sponsoring agency is the Department of Health and Human Services, Centers for Disease Control and Prevention, through NCBDDD, and the funding instrument is a cooperative agreement, which generally signals substantial CDC involvement through guidance, coordination, and shared responsibility for achieving outcomes. The opportunity was posted May 21, 2019, with an original application deadline of July 22, 2019 (11:59 p.m. ET).

Overall, the purpose of this NOFO is to expand the reach of the SCDC model by preparing more states to conduct high-quality, population-based SCD surveillance. The expected payoff is better, more consistent data on who is affected, what complications they experience, how they use the health system, where care gaps occur, and how outcomes differ across communities and states. That improved evidence base is meant to support more informed decisions by public health leaders, clinicians, policymakers, and community stakeholders, ultimately enabling targeted improvements in services, treatment access, and long-term health outcomes 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 "Capacity Building for Sickle Cell Disease Surveillance" 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 May 21, 2019.
• Applicants must submit their applications by Jul 22, 2019 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 $300,000.00 in funding.
• The number of recipients for this funding is limited to 7 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 DD19 1906

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