Long-term health outcomes of people living with spina bifida | CDC RFA DD 26 0222

Opportunity Information: Apply for CDC RFA DD 26 0222

The Centers for Disease Control and Prevention (CDC), through the National Center on Birth Defects and Developmental Disabilities (NCBDDD), is offering a cooperative agreement funding opportunity called "Long-term health outcomes of people living with spina bifida" (Funding Opportunity Number: CDC RFA DD 26 0222; CFDA 93.073). The overall focus is on strengthening and using long-term, real-world clinical data to better understand how children and adults with spina bifida (SB) are doing over time, particularly after different interventions and treatments, and then using that evidence to improve care. The work is grounded in specialty spina bifida clinics that already participate in the National Spina Bifida Patient Registry (NSBPR), meaning the program is designed to build on an existing national infrastructure rather than starting from scratch.

The opportunity is split into two components with related but distinct goals. Component A is designed for approximately 8 to 11 awardees and centers on high-quality longitudinal data collection. In practical terms, this means participating clinics will continue tracking patients with SB across time, capturing standardized information that can show changes in health status, functional outcomes, complications, and other meaningful measures as patients age from childhood into adulthood. The point is not only to gather data, but to ensure it is consistent, complete, and reliable enough to support strong analyses. By sustaining and improving this ongoing data stream, Component A supports a clearer picture of long-term outcomes and variation in care and results across clinical settings.

Component B is intended for approximately 6 to 8 awardees and goes beyond data collection into active clinical quality improvement focused on urologic and kidney health in young children. Specifically, Component B sites will implement and evaluate the UMPIRE iterative protocol (Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida). UMPIRE targets infants and young children with myelomeningocele, a severe form of spina bifida, with the goal of improving urinary tract and kidney management early in life to help preserve renal function. In addition to implementing UMPIRE and studying how well it works in real clinic environments, a key objective is to finalize the UMPIRE protocol for children ages 0 to 10 with myelomeningocele. That implies the protocol is expected to be refined based on what is learned during implementation, including feasibility, adherence, outcomes, and potentially how the protocol performs across different clinical contexts.

Across both components, recipients are expected to do more than simply submit data. The NOFO emphasizes analyzing the collected information and sharing findings to identify opportunities to improve care. This creates a feedback loop: clinics contribute longitudinal registry data, the data are analyzed to understand outcomes and the impact of interventions, and the lessons learned are communicated in ways that can improve clinical practice. Because the funding instrument is a cooperative agreement, applicants should expect meaningful involvement from CDC (for example, coordination, guidance, standardization efforts, and collaborative evaluation), rather than a hands-off grant structure.

From an administrative standpoint, the opportunity is categorized as discretionary funding in the health activity category, with an award ceiling of $300,000 and an expected total of 19 awards across both components. The original closing date is 2026-10-26, and the opportunity was created on 2026-08-26. Eligibility is broad and includes multiple levels of government (state, county, city/township, special district), independent school districts, public and state-controlled institutions of higher education, private institutions of higher education, federally recognized Native American tribal governments, nonprofits (both 501(c)(3) and non-501(c)(3)), for-profit organizations (including entities other than small businesses), and small businesses. In effect, the program is open to a wide range of organizational types, but the core operational requirement implied by the description is access to or partnership with specialized spina bifida clinics that can contribute high-quality clinical registry data and, for Component B, carry out protocol-based urologic management and evaluation in young children.

In summary, this NOFO supports a national effort to improve understanding and management of spina bifida by sustaining robust longitudinal surveillance through the NSBPR (Component A) and by actively testing and refining a structured urologic management approach intended to protect kidney health in early childhood (Component B). The intended result is stronger evidence about long-term outcomes, clearer insight into what interventions work best for which patients, and practical improvements in the quality and consistency of care delivered in specialty spina bifida clinics.

• The Centers for Disease Control - NCBDDD in the health sector is offering a public funding opportunity titled "Long-term health outcomes of people living with spina bifida" 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 2026-08-26.
• Applicants must submit their applications by 2026-10-26. (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 19 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), 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.

Apply for CDC RFA DD 26 0222

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