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Long-term health outcomes of people living with spina bifida

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CDC-RFA-DD-26-0222Grant

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Solicitation CDC-RFA-DD-26-0222 is a cooperative agreement issued by the Centers for Disease Control and Prevention to improve health outcomes for individuals living with spina bifida. The program is divided into two distinct components. Component A focuses on the National Spina Bifida Patient Registry (NSBPR), aiming to collect high-quality longitudinal data from specialized clinics for 8 to 11 awardees, with funding ranging from 2.4 million to 6.6 million dollars. Component B focuses on the implementation and evaluation of the Urologic Management to Preserve Initial Renal Function Protocol (UMPIRE) for 6 to 8 awardees, with funding between 900,000 and 2.7 million dollars. The overall goal is to analyze health outcomes and refine care protocols for infants and children with myelomeningocele. The period of performance is three years, with an expected start date of September 1, 2027. Applications are due by October 26, 2026, via Grants.gov and are open to small businesses and other for-profit organizations. Evaluation is based on a 100-point system focusing on background and approach, organizational capacity, and the evaluation and performance measurement plan. Key requirements include the presence of a data coordinator, a data analyst for Component A, and a pediatric urologist for Component B. Applicants must provide a data management plan, letters of commitment from participating clinics, and a detailed project narrative. All recipients must maintain an active SAM.gov account and adhere to strict data transfer and security protocols for sharing information with the CDC.

General Info

CDC funding for spina bifida data collection and UMPIRE protocol implementation by 10/26/2026.

Documents

1

CDC-RFA-DD-26-0222 Notice of Funding Opportunity

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AgencyDepartment Of Health And Human Services → Centers For Disease Control - Ncbddd
Contacts1 person available
OfficeUSA
Office AddressUSA
Contacts
Centers for Disease Control - NCBDDD

Full Description

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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

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