Improving care and outcomes for people with spina bifida in Wisconsin
Research Approaches to Improving the Care and Outcomes of People Living with Spina Bifida in Wisconsin: The NSBPR
This project follows people with spina bifida in Wisconsin over time to help doctors improve care and long-term health.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Children's Hospital of Wisconsin NIH-funded |
| Lab location | 1 site (Milwaukee, United States) |
| Project ID | NIH-11400830 on NIH RePORTER |
What this research studies
As someone with spina bifida, this project collects my clinic visits, treatments, surgeries, and health outcomes into a shared registry so researchers and care teams can see what works best. The team links my medical information across participating Wisconsin centers and tracks health, mobility, bowel/bladder function, and complications over time. The registry helps identify gaps in care and supports quality-improvement efforts across hospitals and clinics. Participation may include sharing medical records, completing surveys, and periodic follow-up visits.
Who could benefit from this research
Good fit: Ideal candidates are people living with spina bifida in Wisconsin who receive care at participating clinics and can share their medical records and follow-up information.
Not a fit: People without spina bifida, those living outside Wisconsin, or those unwilling to share medical records or attend follow-up visits are unlikely to benefit directly.
Why it matters
Potential benefit: If successful, the project could lead to better-coordinated care, fewer complications, and clearer guidelines for managing spina bifida.
How similar studies have performed: National and regional spina bifida registries and coordinated-care programs have helped improve outcomes and inform best practices, making this approach evidence-based rather than entirely novel.
Where this research is happening
Milwaukee, United States
- Children's Hospital of Wisconsin — Milwaukee, United States (Active)
Researchers
- Principal investigator: Sherburne, Eileen — Children's Hospital of Wisconsin
- Study coordinator: Sherburne, Eileen
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page below.