Oregon Spina Bifida Patient Registry
Oregon Spina Bifida Registry Project-Comp B
['FUNDING_U01'] · OREGON HEALTH & SCIENCE UNIVERSITY · NIH-11423390
This project gathers health and care information from people with spina bifida to help improve care and quality of life.
Quick facts
| Phase | ['FUNDING_U01'] |
|---|---|
| Study type | Nih_funding |
| Sex | All |
| Sponsor | OREGON HEALTH & SCIENCE UNIVERSITY (nih funded) |
| Locations | 1 site (PORTLAND, UNITED STATES) |
| Trial ID | NIH-11423390 on ClinicalTrials.gov |
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.
Who could benefit from this research
Good fit: 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.
Not a fit: 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.
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 performed: 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
PORTLAND, UNITED STATES
- OREGON HEALTH & SCIENCE UNIVERSITY — PORTLAND, UNITED STATES (ACTIVE)
Researchers
- Principal investigator: FREEMAN, KURT A — OREGON HEALTH & SCIENCE UNIVERSITY
- Study coordinator: FREEMAN, KURT A
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 below.