Vanderbilt Spina Bifida Patient Registry
Official title: Comp B National Spina Bifida Patient Registry at Vanderbilt Children's Hospital Component
Funded at Vanderbilt University Medical Center · NIH-11400841 · Data updated 2026-11-12
Collects health information from people with spina bifida at Vanderbilt to track long-term outcomes and help improve their care.
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, 2026 |
| Funding year | 2023 |
| Award (this year) | $80,000 |
| NIH project number | 6U01DD001235-05M003 |
| Project ID | NIH-11400841 on NIH RePORTER |
Who could benefit from this research
✓Could help
People with spina bifida who receive care at Monroe Carell Jr. Children's Hospital at Vanderbilt and are willing to consent to contribute their clinical data to the registry.
✕Less likely to help
People without spina bifida, those not treated at Vanderbilt, or those expecting immediate personal medical benefits may not gain direct benefit from participating.
What this research studies
If you join, your medical information and clinic visit details will be collected over time and entered into the national Spina Bifida Patient Registry. The program approaches eligible patients seen in neurosurgery, orthopedics, and urology clinics at Vanderbilt and asks for consent to contribute longitudinal data. Study staff will perform quality checks on the information sent to the CDC and use the combined data to answer questions about health and care over the years. Results are used to guide better clinical care and treatment plans for people with spina bifida.
Why it matters
Potential benefit: Could help develop better clinical guidelines and long-term care strategies for people with spina bifida.
How similar studies have gone: The National Spina Bifida Patient Registry and related registry-based projects have produced published findings that have informed clinical practice and guideline development.
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.
-
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.