Long-term health outcomes of people living with spina bifida

Source-based overview

The purpose of component A (8-11 awardees) of this NOFO is to collect high-quality longitudinal data on children and adults with spina bifida (SB) who receive care in specialized spina bifida clinics participating in the National Spina Bifida Patient Registry (NSBPR). The purpose of component B (6-8 awardees) is to implement and evaluate the Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE) iterative protocol which aims to improve the management of the urinary and kidney systems in infants and young children with myelomeningocele. Building on existing longitudinal data collection, recipients will continue to collect data on patients with SB to better understand health outcomes after interventions and treatments, analyze the data and share findings to identify opportunities for improvement of care. An additional objective for Component B is to finalize the UMPIRE protocol for children 0-10 years old with myelomeningocele. Sources of data are specialty clinics that care for pediatric and adult patients with SB The official record contains the controlling eligibility, budget, attachment and submission requirements for opportunity CDC-RFA-DD-26-0222.

Eligibility

Eligible applicant types listed by the agency: Native American tribal governments (Federally recognized); Special district governments; Nonprofits that do not have a 501(c)(3) status with the IRS, other than institutions of higher education; Small businesses; Public and State controlled institutions of higher education; Nonprofits having a 501(c)(3) status with the IRS, other than institutions of higher education; Private institutions of higher education; Independent school districts; For profit organizations other than small businesses; City or township governments; County governments; State governments. Applicants must also satisfy every programme-specific condition in the official notice.

Funding and benefits

Award ceiling: USD 300,000

Expected number of awards: 19

Themes and supported activities

The purpose of component A (8-11 awardees) of this NOFO is to collect high-quality longitudinal data on children and adults with spina bifida (SB) who receive care in specialized spina bifida clinics participating in the National Spina Bifida Patient Registry (NSBPR). The purpose of component B (6-8 awardees) is to implement and evaluate the Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE) iterative protocol which aims to improve the management of the urinary and kidney systems in infants and young children with myelomeningocele. Building on existing longitudinal data collection, recipients will continue to collect data on patients with SB to better understand health outcomes after interventions and treatments, analyze the data and share findings to identify opportunities for improvement of care. An additional objective for Component B is to finalize the UMPIRE protocol for children 0-10 years old with myelomeningocele. Sources of data are specialty clinics that care for pediatric and adult patients with SB

Opportunity number: CDC-RFA-DD-26-0222

Deadline and timeline

Applications close 2026-10-26: Applications close 2026-10-26: Oct 26, 2026.

Applicants should confirm the exact deadline time, time zone, required documents, portal steps and any institutional approvals on the official call page before submitting.

How to apply

Open the official Grants.gov record, review the full notice and attachments, and use the application package or agency route stated there.

Before applying, check eligibility rules, budgets, attachments, page limits, partner requirements, cost-share conditions and whether the opportunity uses an expression of interest, full proposal, registration or nomination stage.