Improving care and outcomes for individuals with Spina Bifida
Official title: The Continued Development and Implementation of the Spina Bifida Collaborative Care Network
Funded at Spina Bifida Association · NIH-11142947 · Data updated 2026-11-12
This study is all about improving the lives of people with Spina Bifida by bringing together doctors, patients, and families to share helpful resources and ideas for better care.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Spina Bifida Association NIH-funded |
| Lab location | 1 site (Arlington, UNITED STATES) |
| Project start | September 1, 2019 |
| Project end | August 31, 2025 |
| Funding year | 2023 |
| Award (this year) | $450,000 |
| NIH project number | 6U01DD001257-05M001 |
| Project ID | NIH-11142947 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are individuals diagnosed with Spina Bifida and their families seeking improved care and support.
✕Less likely to help
Patients without a diagnosis of Spina Bifida or those not engaged in the healthcare system may not receive benefits from this research.
What this research studies
This research focuses on enhancing the quality of life for individuals affected by Spina Bifida by developing and implementing a collaborative care network. The Spina Bifida Association aims to connect healthcare professionals, patients, and their families to share resources and best practices. By analyzing clinical outcomes data, the project seeks to identify effective clinic practices that lead to better health outcomes. This collaborative approach fosters communication and support among various stakeholders involved in the care of individuals with Spina Bifida.
Why it matters
Potential benefit: If successful, this research could significantly improve the health outcomes and quality of life for individuals living with Spina Bifida.
How similar studies have gone: Previous initiatives have shown success in improving care through collaborative networks, indicating a promising approach for this research.
Where this research is happening
-
Spina Bifida Association
Arlington, 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.
-
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.
-
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.