Long-term health outcomes of People Living with Spina Bifida based on the National Spina Bifida Patient Registry
Limited submission
This grant supports collecting and analyzing long-term health data from spina bifida clinics and refining a protocol to improve urinary and kidney care in young children with myelomeningocele.
Funder: Centers for Disease Control - NCBDDD
Due Dates: September 26, 2026 (Optional letter of intent) | October 26, 2026 (Full application, 11:59 p.m. ET)
Funding Amounts: $100,000–$300,000 per award per year; up to $3,000,000 total program funding; 3-year project period; 19 awards expected
Summary: Supports longitudinal data collection and evaluation to improve health outcomes for people living with spina bifida through specialized clinics and protocols.
Description
This funding opportunity from the CDC National Center on Birth Defects and Developmental Disabilities (NCBDDD) aims to advance research and data collection on the long-term health outcomes of individuals living with spina bifida (SB). The program is organized into two components:
- Component A supports the collection of high-quality longitudinal data on children and adults with SB through specialized clinics participating in the National Spina Bifida Patient Registry (NSBPR).
- Component B focuses on implementing and evaluating the Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE), with the goal of improving urinary and kidney management in infants and young children with myelomeningocele.
Awardees will collaborate with CDC and other recipients to collect, analyze, and share data, aiming to identify best practices and improve standards of care for SB patients. The program emphasizes rigorous data management, evaluation, and dissemination of findings to clinical and public health audiences.
