Spina Bifida Patient Registry at Vanderbilt
Official title: Comp B National Spina Bifida Patient Registry at Vanderbilt Children's Hospital Component
Funded at Vanderbilt University Medical Center · NIH-11616598 · Data updated 2026-11-12
A California-style patient registry project collects health information from kids and adults with spina bifida treated at Vanderbilt to help understand long-term outcomes.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Vanderbilt University Medical Center NIH-funded |
| Lab location | 1 site (Nashville, United States) |
| Project start | September 1, 2019 |
| Project end | August 31, 2027 |
| Funding year | 2023 |
| Award (this year) | $130,000 |
| NIH project number | 6U01DD001235-05M005 |
| Project ID | NIH-11616598 on NIH RePORTER |
Who could benefit from this research
✓Could help
Patients with spina bifida treated at Vanderbilt’s Spina Bifida Program who are enrolled and consented.
✕Less likely to help
Patients not enrolled or not consenting may not directly benefit from the study.
What this research studies
This project enrolls eligible spina bifida patients from Vanderbilt’s Spina Bifida Program and collects longitudinal data on health status, care, and outcomes over five years. Data quality will be maintained by a dedicated clinical research team and submitted to the national NSBPR with oversight. Researchers will analyze the registry data to identify patterns and questions that can guide better care and future guidelines for spina bifida patients.
Why it matters
Potential benefit: If successful, the registry could inform better clinical guidelines and improve long-term care for people living with spina bifida.
How similar studies have gone: Previous NSBPR efforts have yielded valuable insights into outcomes and practice patterns for spina bifida.
Where this research is happening
-
Vanderbilt University Medical Center
Nashville, United States Active
Researchers
- Principal investigator: Clayton, Douglass Brooks — Vanderbilt University Medical Center
- Study coordinator: Clayton, Douglass Brooks
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.