Improving care for people with spina bifida through a national collaborative network
The Continued Development and Implementation of the Spina Bifida Collaborative Care Network
['FUNDING_U01'] · SPINA BIFIDA ASSOCIATION · NIH-11400833
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
| Phase | ['FUNDING_U01'] |
|---|---|
| Study type | Nih_funding |
| Sex | All |
| Sponsor | SPINA BIFIDA ASSOCIATION (nih funded) |
| Locations | 1 site (Alexandria, UNITED STATES) |
| Trial ID | NIH-11400833 on ClinicalTrials.gov |
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.
Who could benefit from this research
Good fit: 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.
Not a fit: 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.
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 performed: 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
Alexandria, UNITED STATES
- SPINA BIFIDA ASSOCIATION — Alexandria, UNITED STATES (ACTIVE)
Researchers
- Principal investigator: THIBADEAU, JUDY KAREN — SPINA BIFIDA ASSOCIATION
- Study coordinator: THIBADEAU, JUDY KAREN
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.