Lurie Children's Spina Bifida Patient Registry
Official title: National Spina Bifida Patient Registry-Lurie Children's Spina Bifida Center
Funded at Lurie Children's Hospital of Chicago · NIH-11400838 · Data updated 2026-11-12
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 start | September 1, 2019 |
| Project end | August 31, 2026 |
| Funding year | 2023 |
| Award (this year) | $79,999 |
| NIH project number | 6U01DD001272-05M002 |
| Project ID | NIH-11400838 on NIH RePORTER |
Who could benefit from this research
✓Could help
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.
✕Less likely to help
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.
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.
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 gone: 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
-
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.
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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.
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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.