Spina Bifida Collaborative Care Network to Improve Outcomes
Official title: The Continued Development and Implementation of the Spina Bifida Collaborative Care Network
Funded at Spina Bifida Association · NIH-11616602 · Data updated 2026-11-12
A national program is expanding coordinated care networks and a patient registry to help people with Spina Bifida get better, more consistent care.
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, 2027 |
| Funding year | 2023 |
| Award (this year) | $500,000 |
| NIH project number | 6U01DD001257-05M004 |
| Project ID | NIH-11616602 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals living with Spina Bifida and their families, caregivers, and SB care teams who participate in clinics or SB chapter activities.
✕Less likely to help
Patients not engaged with SB care networks or registries may see limited direct benefit.
What this research studies
This grant supports developing and implementing a national collaborative care network for Spina Bifida, linking clinics, clinicians, patients, and families. It uses data from the Spina Bifida Patient Registry to identify care practices that lead to better health and quality of life, and then promotes adoption of those practices. The effort aims to improve communication among providers and SB chapters, so decisions about interventions are better informed. It focuses on translating registry findings into real-world care improvements for individuals living with Spina Bifida. The project runs through 2027 and is led by the Spina Bifida Association in partnership with clinical networks.
Why it matters
Potential benefit: If successful, patients with Spina Bifida could experience more consistent, evidence-based care and improved health outcomes.
How similar studies have gone: Previous efforts with the NSBPR and SBCCN have shown that data-driven care practices can align care and improve outcomes, supporting the potential for impact here.
Where this research is happening
-
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.
-
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.
-
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.
-
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.
-
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.
-
UMPIRE Protocol: Improving Kidney Health for Children with Spina Bifida
A long-term plan to standardize how doctors care for babies and young kids with spina bifida to protect their kidney function.
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.