Oregon Spina Bifida Registry Project - Comp B
Official title: Oregon Spina Bifida Registry Project-Comp B
Funded at Oregon Health & Science University · NIH-11616599 · Data updated 2026-11-12
This grant supports building and refining a national registry to track care practices and health outcomes for people living with spina bifida to 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, 2027 |
| Funding year | 2023 |
| Award (this year) | $130,000 |
| NIH project number | 6U01DD001275-05M004 |
| Project ID | NIH-11616599 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals with spina bifida who receive or interact with participating care centers and contribute to registry data.
✕Less likely to help
Patients whose care centers do not participate or who are not captured by the registry may not experience direct benefits.
What this research studies
Spina bifida is a lifelong condition that requires coordinated medical care. This project expands and improves a national registry to collect and compare data from care centers about how people with spina bifida are treated and how they fare over time. By organizing systematic clinical data, it aims to identify strategies that improve care and reduce disparities. Oregon Health & Science University has long worked in spina bifida care and will contribute their expertise to enhance the national evidence base.
Why it matters
Potential benefit: If successful, clinicians and families could benefit from clearer standards of care and better-informed treatment decisions for spina bifida.
How similar studies have gone: National registries for other chronic conditions have improved understanding of care and outcomes and informed guidelines, with growing but ongoing success.
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.
-
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.
-
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.