Long-term health outcomes of people living with spina bifida

An estimated 160,000 people in the United States (U.S.) currently live with spina bifida (SB). It’s the most common permanently disabling birth defect. Over the years, the National Spina Bifida Patient Registry (NSBPR) and the Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE) protocol have made progress in identifying best practices for people living with SB, but more work is still needed.

Most of the NSBPR and UMPIRE publications so far have focused on describing the data. Descriptive investigations are important. But analyses of longitudinal data are necessary to identify the health care and clinic practices associated with the best outcomes for individuals with SB. Additional years of NSBPR and UMPIRE protocol data will provide insights on long-term outcomes. It’ll help us better understand how current treatment recommendations can benefit these children and their families. In addition, evaluation and refinement of the UMPIRE surveillance protocol will help identify the best possible course of care for infants and children with myelomeningocele. 

You may apply to either Component A or Component B, or both.

Component A: Collect high-quality longitudinal data on children and adults with spina bifida (SB) who get care in specialized SB clinics that are part of the National Spina Bifida Patient Registry (NSBPR).

Component B: Carry out and evaluate the Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE) iterative protocol in infants and young children with myelomeningocele. Building on existing longitudinal data collection, recipients will collect and analyze data on patients with SB to:

• Better understand health outcomes after interventions and treatments.
• Share findings to identify opportunities to improve care of patients with SB.

Application Instructions

Please submit as one combined pdf labeled with PI’s Lastname, Firstname:

1. A one‐page letter of intent with a description of proposed aims and approach.
2. If the final application requires a statement of broader impacts, please summarize your plans to address the specific requirements on an additional page.
3. CV (not biosketch) of the PI including past grant funding.

to limitedsubs@uw.edu by 5:00 PM Wednesday, September 23, 2026. Late pre-proposals will not be considered. Proposals are due to the sponsor 10/26/2026 so you will need to have your materials in to the Office of Sponsored Programs by 10/15/2026 if given the go‐ahead by the Limited Submissions review committee.