National Spina Bifida Patient Registry at Children's Hospital Los Angeles
Component B. National Spina Bifida Patient Registry (NSBPR)
Collects health, treatment, and outcome information from people with spina bifida cared for at CHLA to help improve care and quality of life.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Children's Hospital of Los Angeles NIH-funded |
| Lab location | 1 site (Los Angeles, United States) |
| Project ID | NIH-11423404 on NIH RePORTER |
What this research studies
I would be asked to share health history, treatments, and outcomes so my experience with spina bifida is added to a national registry. The team at CHLA collects this information during clinic visits and from medical records and contributes de-identified data to the larger National Spina Bifida Patient Registry. Researchers use the combined registry data to look for patterns in health issues, complications, and what treatments work best. The goal is to use those findings to improve care at CHLA and for people with spina bifida nationwide.
Who could benefit from this research
Good fit: People of any age with a diagnosis of spina bifida who receive care at the CHLA Spina Bifida Program are the ideal candidates.
Not a fit: People without spina bifida or those who do not receive care at CHLA would not directly benefit from participating in this registry.
Why it matters
Potential benefit: If successful, the registry could help identify better care practices and reduce complications for people living with spina bifida.
How similar studies have performed: National and regional patient registries for spina bifida have previously produced useful findings that informed care practices and quality-improvement efforts.
Where this research is happening
Los Angeles, United States
- Children's Hospital of Los Angeles — Los Angeles, United States (Active)
Researchers
- Principal investigator: Smith, Kathryn a. Navarette — Children's Hospital of Los Angeles
- Study coordinator: Smith, Kathryn a. Navarette
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.