Creating a national registry for patients with spina bifida at Vanderbilt Children's Hospital
Comp B National Spina Bifida Patient Registry at Vanderbilt Children's Hospital Component
This study is creating a national registry to collect health information from people with spina bifida, so we can better understand their needs and improve care for everyone living with this condition.
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-11140257 on NIH RePORTER |
What this research studies
This research aims to establish a national registry for patients with spina bifida, focusing on collecting and analyzing long-term health data. The Spina Bifida Program at Vanderbilt evaluates over 250 patients annually, and this project will enroll eligible patients to gather comprehensive information on their health status and clinical outcomes. By contributing this data to the National Spina Bifida Patient Registry, the research seeks to identify best practices and improve care for individuals with spina bifida. The project will also involve quality control measures to ensure the accuracy of the data collected.
Who could benefit from this research
Good fit: Ideal candidates for this research are individuals diagnosed with spina bifida who are receiving care at Vanderbilt Children's Hospital.
Not a fit: Patients without a diagnosis of spina bifida or those not receiving care at Vanderbilt may not benefit from this research.
Why it matters
Potential benefit: If successful, this research could lead to improved clinical guidelines and better health outcomes for patients with spina bifida.
How similar studies have performed: Previous research utilizing national registries for chronic conditions has shown success in improving patient outcomes and informing best practices.
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.