National Spina Bifida Patient Registry at Children's Hospital Los Angeles
Official title: Component B. National Spina Bifida Patient Registry (NSBPR)
Funded at Children's Hospital of Los Angeles · NIH-11423404 · Data updated 2026-11-12
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 start | September 1, 2019 |
| Project end | August 31, 2026 |
| Funding year | 2023 |
| Award (this year) | $80,000 |
| NIH project number | 6U01DD001274-05M002 |
| Project ID | NIH-11423404 on NIH RePORTER |
Who could benefit from this research
✓Could help
People of any age with a diagnosis of spina bifida who receive care at the CHLA Spina Bifida Program are the ideal candidates.
✕Less likely to help
People without spina bifida or those who do not receive care at CHLA would not directly benefit from participating in this registry.
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.
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 gone: 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
-
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
Related research
Other NIH-funded projects on the same topics.
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Improving care and outcomes for people living with spina bifida in Wisconsin
A patient-friendly project aims to improve everyday care and health outcomes for people with spina bifida in Wisconsin.
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The National Spina Bifida Patient Registry at University of Pittsburgh
A national registry project at the University of Pittsburgh aims to collect and organize information about people with spina bifida to improve care.
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Improving Care and Outcomes for People Living with Spina Bifida
A patient-friendly project aims to improve how people with spina bifida are cared for and how well they do over time.
-
Scoliosis and neurosurgical factors in myelomeningocele: a clinic registry study
This project uses registry data from Penn State’s Spina Bifida Clinic to understand how brain and spine-related issues influence when and why scoliosis surgery is needed in people with myelomeningocele.
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UMPIRE: Better Urologic Care for Babies with Spina Bifida
This grant tests how to best protect kidney function in newborns with spina bifida by comparing and refining urologic care practices across multiple hospitals.
-
Spina Bifida Collaborative Care Network to Improve Outcomes
A national program is expanding coordinated care networks and a patient registry to help people with Spina Bifida get better, more consistent care.
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.