Oregon Spina Bifida Patient Registry
Official title: Oregon Spina Bifida Registry Project-Comp B
Funded at Oregon Health & Science University · NIH-11423390 · Data updated 2026-11-12
This project gathers health and care information from people with spina bifida to help improve care and quality of life.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Oregon Health & Science University NIH-funded |
| Lab location | 1 site (Portland, United States) |
| Project start | September 1, 2019 |
| Project end | August 31, 2026 |
| Funding year | 2023 |
| Award (this year) | $80,000 |
| NIH project number | 6U01DD001275-05M002 |
| Project ID | NIH-11423390 on NIH RePORTER |
Who could benefit from this research
✓Could help
People of any age living with spina bifida who receive care at participating clinics or agree to have their clinical data included in the registry are the ideal candidates.
✕Less likely to help
People without spina bifida or those who do not receive care at participating centers or decline data sharing are unlikely to benefit directly from this project.
What this research studies
You would have key medical and care information from your clinic collected into a regional and national spina bifida registry that tracks outcomes over time. Participating centers like Oregon Health & Science University submit standardized clinical data so researchers can compare care practices and patient results across sites. The project supports continued refining of the registry, data standards, and tools to identify gaps and best practices in spina bifida care. Your de-identified information may be used to help develop care guidelines and reduce differences in care across centers.
Why it matters
Potential benefit: If successful, the registry could lead to better national care standards, reduced disparities, and improved health and quality of life for people with spina bifida.
How similar studies have gone: National patient registries for spina bifida and other chronic conditions have been used successfully to compare outcomes across centers and guide improvements in care, and this project builds on that established approach.
Where this research is happening
-
Oregon Health & Science University
Portland, United States Active
Researchers
- Principal investigator: Freeman, Kurt a — Oregon Health & Science University
- Study coordinator: Freeman, Kurt a
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.