RFAs: Long-term Health Outcomes of People Living with Spina Bifida (US)

Deadline: 26-Oct-26

The Long-Term Health Outcomes of People Living with Spina Bifida Grant supports research, longitudinal data collection, and improved clinical management for children and adults living with spina bifida. The program provides funding of $100,000 to $300,000 per award from an estimated total funding pool of $3 million. The grant focuses on strengthening the National Spina Bifida Patient Registry, understanding long-term health outcomes, and implementing and evaluating the Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE). Long-Term Health Outcomes of People Living with Spina Bifida Grant – Overview The funding opportunity is designed to generate better evidence about the long-term health, treatment outcomes, and care needs of people living with spina bifida. Supported projects may involve specialized clinics participating in the National Spina Bifida Patient Registry and may include research involving both pediatric and adult patients.

Key details include:

- Program: Long-Term Health Outcomes of People Living with Spina Bifida Grant

- Estimated total funding: $3,000,000

- Individual award range: $100,000 to $300,000

- Primary focus: Spina bifida research and long-term health outcomes

- Key data resource: National Spina Bifida Patient Registry

- Special focus: UMPIRE protocol for young children with myelomeningocele

- Target age group for UMPIRE: Children aged 0–10 years

- Eligible applicants: Government entities, nonprofits, businesses, higher education institutions, tribal governments, and other eligible organizations

What Is the Purpose of the Grant? The primary purpose of the grant is to improve understanding of the long-term health outcomes of people living with spina bifida. Spina bifida is a neural tube defect that can result in lifelong health and functional challenges. Long-term monitoring and high-quality clinical data can help researchers and healthcare professionals understand how different treatments and interventions affect patients over time.

The program therefore supports:

- Longitudinal patient data collection - Research into long-term health outcomes - Analysis of treatment and intervention outcomes - Improved understanding of urinary and kidney health - Evidence-based clinical management - Research collaboration among specialized clinics - Development and evaluation of improved care protocols What Research Does the Program Support? Funded recipients are expected to conduct research and data-related activities that contribute to better understanding and management of spina bifida. Projects may support the continuation or expansion of patient data collection through specialized clinics participating in the National Spina Bifida Patient Registry. Researchers may also analyze existing data to determine: - How patients respond to different interventions - Long-term outcomes following treatment - Patterns in health complications - Opportunities to improve clinical care - Factors associated with better patient outcomes The resulting evidence can help identify gaps in care and inform future approaches to managing spina bifida throughout a patient’s life. National Spina Bifida Patient Registry The National Spina Bifida Patient Registry is an important component of this funding opportunity. The registry provides longitudinal information that can be used to study patients with spina bifida over time. Continued data collection allows researchers to examine health outcomes across childhood and adulthood rather than relying only on short-term clinical observations. Grant recipients may use registry-related research activities to: - Expand longitudinal data collection - Monitor patient outcomes - Evaluate interventions and treatments - Identify trends in long-term health - Generate evidence for improving patient care - Share research findings with relevant stakeholders What Is the UMPIRE Protocol? A major component of the funding opportunity involves the Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida, commonly referred to as UMPIRE. The protocol focuses on urinary and kidney system management in infants and young children with myelomeningocele, a severe form of spina bifida. The program seeks to implement and evaluate UMPIRE and use clinical data to improve understanding of early urologic management. For Component B, the additional objective is to help finalize the UMPIRE protocol for children aged 0–10 years with myelomeningocele. Why Kidney and Urinary Health Matters People with spina bifida can experience significant urologic complications. Early and appropriate management of the urinary system can therefore be an important part of long-term care. The UMPIRE-related research component is intended to strengthen evidence around early management and help researchers understand whether particular approaches can help preserve initial renal function.

The research may contribute to:

- Better early identification of urologic risks - Improved urinary management - Protection of kidney function - Better long-term outcomes for children with myelomeningocele - More consistent clinical approaches across specialized centers Who Is Eligible? The funding opportunity is open to a broad range of eligible organizations.

Potential applicants include:

- Independent school districts - County governments - Nonprofit organizations, including organizations without 501(c)(3) status - For-profit organizations other than small businesses - Small businesses - Public and private institutions of higher education - Special district governments - Federally recognized Native American tribal governments - State governments - City or township governments Institutions of higher education are excluded from the nonprofit applicant category but are separately listed as eligible public and private institutions of higher education. Organizations should review the official funding announcement fo