Vanderbilt Spina Bifida Patient Registry
Comp B National Spina Bifida Patient Registry at Vanderbilt Children's Hospital Component
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 ID | NIH-11400841 on NIH RePORTER |
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.
Who could benefit from this research
Good fit: 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.
Not a fit: People without spina bifida, those not treated at Vanderbilt, or those expecting immediate personal medical benefits may not gain direct benefit from participating.
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 performed: 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
Nashville, United States
- Vanderbilt University Medical Center — Nashville, United States (Active)
Researchers
- Principal investigator: Clayton, Douglass Brooks — Vanderbilt University Medical Center
- Study coordinator: Clayton, Douglass Brooks
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 below.