Improving care for people with spina bifida through a national collaborative network
Official title: The Continued Development and Implementation of the Spina Bifida Collaborative Care Network
Funded at Spina Bifida Association · NIH-11400833 · Data updated 2026-11-12
This project uses national patient registry data to find clinic practices that lead to better outcomes for people with spina bifida and shares those practices with clinics across the country.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Spina Bifida Association NIH-funded |
| Lab location | 1 site (Alexandria, UNITED STATES) |
| Project start | September 1, 2019 |
| Project end | August 31, 2026 |
| Funding year | 2023 |
| Award (this year) | $450,000 |
| NIH project number | 6U01DD001257-05M002 |
| Project ID | NIH-11400833 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal participants are people with spina bifida who receive care at or are willing to enroll through a participating Spina Bifida clinic or the national registry.
✕Less likely to help
Patients who do not receive care at participating clinics, are not enrolled in the registry, or whose needs fall outside the practices studied may not see direct benefit from this project.
What this research studies
If you have spina bifida, this network gathers information from clinics and the National Spina Bifida Patient Registry about health outcomes and care routines. Researchers compare practices across clinics to identify which approaches are linked with the best health, mobility, and quality-of-life results. The network then communicates those effective practices to clinics, healthcare teams, and local Spina Bifida Association chapters to encourage wider use. Over time this aims to make high-quality care more consistent for people with spina bifida nationwide.
Why it matters
Potential benefit: If successful, clinics could adopt proven care practices that improve health, function, and quality of life for people living with spina bifida.
How similar studies have gone: Registry-based collaborative care networks for other conditions have helped spread best practices and improved outcomes, and this project builds on that established model for spina bifida.
Where this research is happening
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Spina Bifida Association
Alexandria, United States Active
Researchers
- Principal investigator: Thibadeau, Judy Karen — Spina Bifida Association
- Study coordinator: Thibadeau, Judy Karen
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.
-
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.