Long-term health outcomes of People Living with Spina Bifida based on the National Spina Bifida Patient Registry - CDC-RFA-DD-26-0222

The Centers for Disease Control and Prevention (CDC), under the U.S. Department of Health and Human Services, is forecasting a cooperative agreement opportunity titled "Long-term health outcomes of People Living with Spina Bifida based on the National Spina Bifida Patient Registry." This funding opportunity, managed through the National Center on Birth Defects and Developmental Disabilities (NCBDDD), reflects the CDC's ongoing commitment to improving health outcomes and care strategies for individuals living with spina bifida (SB). Spina bifida is a complex congenital condition that requires lifelong management, and this program seeks to leverage and expand existing data infrastructure to better understand the long-term outcomes for affected individuals. This grant comprises two components. Component A aims to support 8 to 11 recipients in the collection of high-quality, longitudinal health data from both children and adults with spina bifida who receive care in specialized clinics participating in the National Spina Bifida Patient Registry (NSBPR). These clinics represent a key source of standardized information that can inform national strategies to enhance care quality and reduce long-term complications. Component B is focused on 6 to 8 awards intended to implement and evaluate the Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE). This protocol is a structured, iterative model designed to protect renal function in infants and young children with myelomeningocele, the most severe form of SB. The data collected through this initiative is expected to support evaluation of clinical interventions and their impact over time, thereby informing future healthcare strategies. In Component B, awardees will not only conduct implementation and evaluation of the UMPIRE protocol but will also contribute to the finalization of the protocol covering children aged 0–10 years. All work will be grounded in the practical clinical environment of SB specialty clinics, ensuring that findings are rooted in real-world clinical care. Funding will be delivered through cooperative agreements, which means substantial involvement from CDC program staff in the planning and execution of projects. The total anticipated funding for this initiative is approximately $2.33 million, with award ceilings and floors of $488,571 and $166,428 respectively. Cost sharing or matching is not required. Approximately 19 awards are expected. Funding will support activities aligned with improving surveillance, prevention, and care quality for SB patients, and all recipients will be expected to participate in data analysis, reporting, and dissemination of findings. Eligible applicants include a wide array of entities such as Native American tribal governments, local and state governments, small businesses, for-profit organizations, nonprofit organizations with or without 501(c)(3) status (excluding higher education institutions), independent school districts, and both public and private institutions of higher education. The program has nationwide reach, and there are no geographic limitations specified. The estimated timeline anticipates the application portal opening on January 15, 2026, with final submissions due by March 16, 2026 at 11:59 pm Eastern Time. Awards are expected to be made by August 11, 2026, and the projects will commence on September 1, 2026. No pre-application documents such as letters of intent or concept papers are required. The forecast suggests this is a recurring opportunity, and the next cycle is anticipated for Spring 2027, with internal review slated for March 1, 2027. For further information, the primary contact is Stephanie Griswold at [email protected] or 404-718-2623.