National Spina Bifida Patient Registry across the U.S.
Official title: Centers for Disease Control and Prevention National Spina Bifida Patient Registry
Funded at Ut Southwestern Medical Center · NIH-11616594 · Data updated 2026-11-12
A national registry collects health information from people with spina bifida to help doctors and families get better, more consistent care.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Ut Southwestern Medical Center NIH-funded |
| Lab location | 1 site (Dallas, United States) |
| Project start | September 1, 2019 |
| Project end | August 31, 2027 |
| Funding year | 2023 |
| Award (this year) | $121,641 |
| NIH project number | 6U01DD001262-05M004 |
| Project ID | NIH-11616594 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals with spina bifida/myelomeningocele who participate in participating clinics or registries.
✕Less likely to help
Patients not enrolled in participating clinics or who do not contribute data may not directly benefit.
What this research studies
This project collects and analyzes data from individuals with spina bifida to understand care patterns, outcomes, and quality of life across diverse clinics. It involves ongoing collaboration between clinics, researchers, and public health partners to ensure up-to-date standards and practical published findings. The registry is designed to be flexible so it can adapt as new care guidelines emerge, while producing real-world reports to guide better care decisions for families.
Why it matters
Potential benefit: If successful, it could lead to improved guidelines, better coordination of services, and higher quality of life for people living with spina bifida.
How similar studies have gone: Prior registries and large collaborative data efforts have shown value in improving care patterns and outcomes for chronic pediatric conditions.
Where this research is happening
-
Ut Southwestern Medical Center
Dallas, United States Active
Researchers
- Principal investigator: Adams, Richard C. — Ut Southwestern Medical Center
- Study coordinator: Adams, Richard C.
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.
-
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.
-
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.