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.Apply for CDC RFA DD20 2003
- 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.
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Frequently Asked Questions (FAQs): Sickle Cell Data Collection (SCDC) Program - CDC RFA DD20-2003
1. What is the Sickle Cell Data Collection (SCDC) Program?
The Sickle Cell Data Collection (SCDC) Program is a CDC funding opportunity designed to expand state-based surveillance of sickle cell disease (SCD). The program supports the creation or strengthening of a statewide, population-based surveillance system that can reliably identify people living with SCD and collect standardized information about their clinical history and health care use.
2. Why is CDC funding state-based SCD surveillance?
CDC notes that the United States does not have a national sickle cell disease surveillance system. This leaves major gaps in understanding how SCD progresses over time, why patient experiences vary so widely, and what care patterns and policy decisions might best improve outcomes. Expanding state-based surveillance is intended to build a clearer, more representative picture of SCD across the country.
3. What public health problem is this program trying to solve?
This program targets the lack of comprehensive, standardized SCD surveillance data in the U.S. Without consistent, statewide data systems, it is harder to measure incidence and prevalence, track health care utilization and outcomes, understand mortality patterns, and identify where care systems are failing patients.
4. What is sickle cell disease (SCD), and why is it important?
Sickle cell disease is described as the most common inherited blood disorder in the United States and affects an estimated 90,000 to 100,000 people nationwide. It can lead to serious complications such as chronic anemia, severe and recurrent pain episodes, infections, stroke, and progressive organ damage.
5. What factors contribute to poor outcomes in SCD, according to CDC?
CDC highlights that many poor outcomes are linked to limited access to comprehensive care, particularly as patients transition into adulthood, along with historically limited treatment options.
6. What is the overall goal of expanding SCDC into more states?
The goal is to build a clearer and more representative understanding of SCD across the country by strengthening state surveillance systems. CDC recognizes that outcomes vary by state due to differences in demographics, health care systems, insurance and Medicaid policies, and local barriers to specialized care.
7. Who is offering this funding?
The funding is offered by the U.S. Department of Health and Human Services (HHS), Centers for Disease Control and Prevention (CDC), within CDC's National Center on Birth Defects and Developmental Disabilities (NCBDDD).
8. What type of grant mechanism is used?
This opportunity is offered as a cooperative agreement, which generally indicates that CDC expects to have substantial involvement in the funded activities as described in the notice of funding opportunity (NOFO).
9. What is the opportunity number and CFDA listing?
The opportunity number is CDC RFA DD20-2003. It is categorized as discretionary health funding under CFDA 93.080.
10. How long is the planned period of performance?
CDC planned a three-year period of performance for this funding opportunity.
11. How many awards does CDC expect to make?
The notice indicates an intent to fund up to five recipients under this competition. The source listing also notes an expectation of six awards, which can happen if final decisions adjust based on available funds, application quality, or how CDC structures awards. Applicants are typically expected to rely on the NOFO language and any amendments as the most authoritative source.
12. What is the maximum award amount?
The award ceiling listed for this opportunity is $500,000.
13. What kinds of activities does the SCDC program fund?
The program funds activities to create or strengthen statewide, population-based SCD surveillance systems, including the ability to identify individuals living with SCD and to collect standardized information about clinical history and health care use. The work also supports annual reporting of aggregate-level data and, optionally, deeper analysis and dissemination of findings.
14. What is meant by a "statewide, population-based surveillance system" in this opportunity?
Based on the description, it means a surveillance approach designed to cover the state population in a way that can reliably identify people with SCD statewide and describe their health experiences consistently, using standardized data elements and processes.
15. What are the two main components of the program?
Program work is structured around two components: a required Core Component and an optional Supplemental Component that can be requested in the same application.
16. What is included in the Core Component?
The Core Component is required for all applicants and focuses on the operational foundation of surveillance. It includes building and engaging a surveillance team, carrying out data collection, and producing annual reporting of aggregate-level data. In practice, this includes establishing partnerships, data use arrangements, and processes needed to routinely combine information that identifies people with SCD and describes their health experiences at the state level.
17. Is the Supplemental Component required?
No. The Supplemental Component is optional and can be requested within the same application.
18. What is included in the Supplemental Component?
The Supplemental Component emphasizes deeper analysis of collected surveillance data and active dissemination of results. Its purpose is to ensure the data are translated into findings that can guide stakeholders toward specific improvements in care delivery and access.
19. Who are the intended audiences for the findings produced by this program?
The notice describes stakeholders who may use the findings, including clinicians, public health agencies, policymakers, and community organizations.
20. What kinds of real-world outcomes have earlier SCDC efforts produced?
CDC notes that since operating the SCDC program beginning in 2015 in two states, the resulting data have helped pinpoint gaps in diagnosis, treatment, and access to care. 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.
21. When did CDC first operate the SCDC program, and where?
CDC has operated the SCDC program since 2015 in two states, according to the notice.
22. Why does CDC emphasize differences between states?
CDC recognizes that SCD outcomes are shaped by each state's demographics, health care systems, insurance and Medicaid policies, and local barriers to specialized care. Expanding SCDC to more states is intended to capture these variations and improve understanding of how context affects outcomes.
23. What types of data does the program aim to collect?
The program is intended to collect standardized information about individuals living with SCD, including clinical history and health care use, and to support annual reporting of aggregate-level data. The broader intent includes improved measurement of incidence, prevalence, demographics, utilization patterns, and mortality.
24. What kinds of organizations are eligible to apply?
Eligibility is broad and includes, among others: 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.
25. Why is eligibility so broad for this opportunity?
The notice explains 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.
26. Does the program require a single national SCD surveillance system?
No. CDC's intent is to strengthen the national evidence base by expanding SCDC into additional states rather than waiting for a single, fully centralized national surveillance system to emerge.
27. What is the expected long-term payoff of the program?
Over time, the program is meant to support better measurement and understanding of SCD and to enable clearer identification of where systems fail patients and where interventions may have the biggest impact. The intent is to support more informed decision-making, stronger policy development, and more targeted improvements in clinical practice and service delivery for people living with SCD.
28. What should applicants rely on if award counts differ across sources?
The information notes that award counts can differ (for example, "up to five" versus an "expectation of six") depending on final program decisions. Applicants are typically advised to rely on the NOFO language and any amendments as the most authoritative source.
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