Surveillance of Spina Bifida across the Lifespan | CDC RFA DD 24 0065

Opportunity Information: Apply for CDC RFA DD 24 0065

The CDC funding opportunity "Surveillance of Spina Bifida across the Lifespan" (CDC-RFA-DD-24-0065) supports a non-research cooperative agreement aimed at building a clearer, population-based picture of how many people in the United States are living with spina bifida and what their long-term health and health care experiences look like. The central idea is to move beyond counts of affected newborns and develop a surveillance approach that captures both children and adults, including people who may not receive care in specialized spina bifida clinics. The surveillance catchment area can be an entire state or a defined region within a state, as long as the approach produces an accurate population-based sample.

This opportunity exists because current ways of tracking spina bifida are incomplete once people age beyond infancy. Traditional birth defects surveillance programs are strong at identifying babies born with spina bifida, but they generally do not follow individuals through childhood, adolescence, and adulthood. Meanwhile, the National Spina Bifida Patient Registry offers valuable long-term clinical information, but it is based primarily on participating specialty clinics and does not fully represent people who receive care elsewhere or who have limited access to specialty services. Standard household surveys also tend to miss the mark because spina bifida is relatively uncommon, so surveys typically cannot find enough individuals to produce reliable estimates. CDC is addressing these gaps by supporting multi-source surveillance that links and integrates existing records over time.

The project is structured around two components: a required Component A and an optional Component B. Component A is the core surveillance work and focuses on identifying individuals with spina bifida and then describing outcomes across the lifespan. Applicants are expected to use multiple existing data sources to find cases and follow people longitudinally. Required data sources include a population-based birth defects surveillance system (such as a state birth defects surveillance program), state vital records, and at least one source that can support long-term follow-up. Examples of long-term follow-up sources include electronic health records and administrative datasets such as Medicaid and Medicare claims or hospital discharge data. The intent is to produce more complete case-finding and outcome measurement than any single system could provide by itself.

Component A has three main objectives. First, recipients will estimate the prevalence of spina bifida across all ages and also examine mortality and survival, which helps clarify how many children and adults are living with spina bifida in the surveillance area and how survival patterns vary over time. Second, they will describe health care utilization and sources of care, which can include patterns such as inpatient hospital use, outpatient visits, use of specialty versus primary care, and reliance on public insurance programs, depending on available data. Third, they will assess health status and long-term outcomes, using the linked data to better understand the lived health experience of individuals with spina bifida as they age, including potential complications and broader indicators of health and functioning that can be measured through the available records.

Component B is optional and is described as a set of special projects related to spina bifida surveillance. These projects are meant to be developed, implemented, and evaluated by awardees as a way to advance surveillance methods or generate practical tools and insights. Examples provided include novel approaches to case-finding, reporting, or outcome prediction. Importantly, Component B cannot stand alone: applicants must apply for Component A, and they can only receive Component B funding if they are funded for Component A. Component B is also time-limited (for example, years 2 and 3 of the overall project) and dependent on available funds.

Eligibility is listed as unrestricted, but there are practical requirements that shape who can realistically apply. For Component A, the applicant must have public health authority to conduct spina bifida surveillance and must have access to state birth defects surveillance data and state vital records data. This points to state health departments or other entities formally authorized to conduct public health surveillance and able to manage and link sensitive datasets under appropriate legal and privacy protections. Because this is a cooperative agreement, CDC will have substantial involvement compared with a standard grant, typically meaning closer collaboration on surveillance methods, data standards, and deliverables.

Funding and timeline details emphasize a multi-year, infrastructure-oriented effort. Total estimated funding for Component A is $8,000,000 across five years, with CDC expecting to make about four awards. Component B has an estimated total of $400,000 across two years. The award ceiling listed for the opportunity is $450,000. The opportunity is administered by CDC's National Center on Birth Defects and Developmental Disabilities (NCBDDD) under CFDA 93.073, and the original application closing date was April 15, 2024.

Overall, this opportunity is designed to help public health agencies build and demonstrate a scalable model for lifespan spina bifida surveillance by linking birth defects surveillance and vital records with longitudinal health data sources. The expected result is more reliable prevalence estimates, clearer information on survival and mortality, better understanding of how and where people receive care, and actionable insight into long-term outcomes. CDCs broader goal is to use that evidence to identify concrete opportunities to improve health and health care for people living with spina bifida, including groups that may be underrepresented in clinic-based registries.

• The Centers for Disease Control - NCBDDD in the health sector is offering a public funding opportunity titled "Surveillance of Spina Bifida across the Lifespan" and is now available to receive applicants.
• Interested and eligible applicants and submit their applications by referencing the CFDA number(s): 93.073.
• This funding opportunity was created on 2024-02-15.
• Applicants must submit their applications by 2024-04-15. (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 $450,000.00 in funding.
• The number of recipients for this funding is limited to 4 candidate(s).
• Eligible applicants include: Unrestricted.

Apply for CDC RFA DD 24 0065

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