National Spina Bifida Patient Registry at Lurie Children's Hospital
Official title: National Spina Bifida Patient Registry-Lurie Children's Spina Bifida Center
Funded at Lurie Children's Hospital of Chicago · NIH-11616584 · Data updated 2026-11-12
A long-term registry program collects health data from children and adults with spina bifida to understand how different treatments affect outcomes.
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 start | September 1, 2019 |
| Project end | August 31, 2027 |
| Funding year | 2023 |
| Award (this year) | $129,999 |
| NIH project number | 6U01DD001272-05M004 |
| Project ID | NIH-11616584 on NIH RePORTER |
Who could benefit from this research
✓Could help
Children and adults living with spina bifida who receive care at participating institutions.
✕Less likely to help
Patients whose care is not within the NSBPR network or who do not share data with the registry may not directly benefit.
What this research studies
If you or your child has spina bifida, this project gathers ongoing health information from multiple centers to compare care approaches. Researchers will analyze patterns in neurologic, orthopedic, and urologic health to identify which treatments work best in real life. The goal is to use what’s learned to improve care and create best-practice recommendations across centers.
Why it matters
Potential benefit: It could lead to better treatments and care guidelines that improve health and quality of life for people with spina bifida.
How similar studies have gone: Longitudinal patient registries have successfully informed improvements in care for chronic conditions similar to spina bifida.
Where this research is happening
-
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
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.