Lurie Children's Spina Bifida Patient Registry
National Spina Bifida Patient Registry-Lurie Children's Spina Bifida Center
This project collects health information over time from children and adults with spina bifida to compare care approaches and help doctors learn what works best.
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-11400838 on NIH RePORTER |
What this research studies
If you or your child has spina bifida, this registry records clinic visits, treatments, and health outcomes over many years to track how people are doing. The registry is run across multiple hospitals so doctors can compare different treatment approaches for neurologic, orthopedic, and urologic issues. Your medical data and follow-up information would be entered into a secure database and used to spot patterns and outcomes across centers. The goal is to turn those findings into shared best-practice recommendations to improve care for everyone living with spina bifida.
Who could benefit from this research
Good fit: Children and adults living with spina bifida who receive care at Lurie Children's or another participating NSBPR center and are willing to share their medical and follow-up data are ideal candidates.
Not a fit: People without spina bifida or those who do not receive care at participating centers and therefore cannot join the registry are unlikely to benefit directly from this project.
Why it matters
Potential benefit: If successful, the project could produce best-practice recommendations that improve long-term health and wellness for people with spina bifida.
How similar studies have performed: The National Spina Bifida Patient Registry has collected data since 2008 and past analyses from the registry have already helped inform care and practice patterns.
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.