National Spina Bifida Patient Registry, Component B
Official title: Component B. National Spina Bifida Patient Registry (NSBPR)
Funded at Children's Hospital of Los Angeles · NIH-11616585 · Data updated 2026-11-12
This project continues collecting and sharing information from people with spina bifida to improve care and outcomes.
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, 2027 |
| Funding year | 2023 |
| Award (this year) | $129,998 |
| NIH project number | 6U01DD001274-05M004 |
| Project ID | NIH-11616585 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals living with spina bifida, particularly those treated in the CHLA Spina Bifida Program, may contribute data or benefit from findings.
✕Less likely to help
People with spina bifida not connected to the CHLA program, or those whose care needs are outside the registry’s scope, may not directly benefit.
What this research studies
This grant supports ongoing participation in the National Spina Bifida Patient Registry, gathering health status, treatments, and outcomes so clinicians and researchers can understand needs and improve care. By using existing registry data, the team aims to contribute high-quality, collaborative research focused on the spina bifida population. The work is centered at Children’s Hospital of Los Angeles, with the goal of improving clinical care and health outcomes for SB patients served there and beyond. The project highlights the real-world experiences of people living with spina bifida to guide better services and support.
Why it matters
Potential benefit: Patients with spina bifida could see improved care quality and health outcomes through better understanding of what works.
How similar studies have gone: Registry-based research has previously helped identify care gaps and improve outcomes for spina bifida populations.
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.
-
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.