A registry for individuals with spina bifida to track health outcomes.
National Spina Bifida Patient Registry-Lurie Children's Spina Bifida Center
This study is looking for people with spina bifida to share their health information so we can learn which treatments work best and improve care for everyone with the condition.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Lurie Children's Hospital of Chicago NIH-funded |
| Lab location | 1 site (Chicago, United States) |
| Project ID | NIH-11140941 on NIH RePORTER |
What this research studies
This research involves the National Spina Bifida Patient Registry, which collects long-term health data from individuals with spina bifida. By gathering information from multiple treatment centers, the registry aims to compare health outcomes based on different treatment approaches. This data will help identify best practices in managing spina bifida, ultimately improving care for patients. Participants will contribute to a growing database that informs future treatment strategies and enhances patient health.
Who could benefit from this research
Good fit: Ideal candidates for this research are individuals of all ages diagnosed with spina bifida.
Not a fit: Patients with conditions unrelated to spina bifida or those who do not wish to participate in registry data collection may not benefit from this research.
Why it matters
Potential benefit: If successful, this research could lead to improved health outcomes and quality of life for individuals living with spina bifida.
How similar studies have performed: Previous research using similar registry approaches has shown success in improving patient outcomes in various chronic conditions.
Where this research is happening
Chicago, United States
- Lurie Children's Hospital of Chicago — Chicago, United States (Active)
Researchers
- Principal investigator: Bowman, Robin — Lurie Children's Hospital of Chicago
- Study coordinator: Bowman, Robin
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.