Improving care and outcomes for people with spina bifida in Wisconsin
Official title: Research Approaches to Improving the Care and Outcomes of People Living with Spina Bifida in Wisconsin: The NSBPR
Funded at Children's Hospital of Wisconsin · NIH-11400830 · Data updated 2026-11-12
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 start | September 1, 2019 |
| Project end | August 31, 2026 |
| Funding year | 2019 |
| Award (this year) | $80,000 |
| NIH project number | 6U01DD001240-05M002 |
| Project ID | NIH-11400830 on NIH RePORTER |
Who could benefit from this research
✓Could help
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.
✕Less likely to help
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.
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.
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 gone: 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
-
Children's Hospital of Wisconsin
Milwaukee, United States Active
Researchers
- Principal investigator: Sherburne, Eileen — Children's Hospital of Wisconsin
- Study coordinator: Sherburne, Eileen
Related research
Other NIH-funded projects on the same topics.
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Improving care and outcomes for people living with spina bifida in Wisconsin
A patient-friendly project aims to improve everyday care and health outcomes for people with spina bifida in Wisconsin.
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The National Spina Bifida Patient Registry at University of Pittsburgh
A national registry project at the University of Pittsburgh aims to collect and organize information about people with spina bifida to improve care.
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Improving Care and Outcomes for People Living with Spina Bifida
A patient-friendly project aims to improve how people with spina bifida are cared for and how well they do over time.
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Scoliosis and neurosurgical factors in myelomeningocele: a clinic registry study
This project uses registry data from Penn State’s Spina Bifida Clinic to understand how brain and spine-related issues influence when and why scoliosis surgery is needed in people with myelomeningocele.
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UMPIRE: Better Urologic Care for Babies with Spina Bifida
This grant tests how to best protect kidney function in newborns with spina bifida by comparing and refining urologic care practices across multiple hospitals.
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Spina Bifida Collaborative Care Network to Improve Outcomes
A national program is expanding coordinated care networks and a patient registry to help people with Spina Bifida get better, more consistent care.
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.