Improving care and outcomes for individuals with spina bifida
Oregon Spina Bifida Registry Project-Comp B
This study is all about improving care and health for people with spina bifida by gathering information from different medical centers, so we can find the best ways to help everyone live healthier and happier lives.
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 ID | NIH-11142941 on NIH RePORTER |
What this research studies
This project focuses on enhancing the understanding of care practices and health outcomes for individuals living with spina bifida, a common birth defect requiring long-term medical care. By establishing a national patient registry, the research aims to collect and analyze data from various care centers, allowing for comparisons and identification of effective strategies to improve patient outcomes. The project builds on existing efforts and aims to develop national standards of care to reduce disparities in treatment and enhance quality of life for patients.
Who could benefit from this research
Good fit: Ideal candidates for this research are individuals diagnosed with spina bifida who require ongoing medical care.
Not a fit: Patients without a diagnosis of spina bifida or those who do not require long-term medical care may not benefit from this research.
Why it matters
Potential benefit: If successful, this research could lead to improved health outcomes and quality of life for individuals with spina bifida.
How similar studies have performed: Previous research involving national registries for chronic conditions has shown success in improving care practices and patient outcomes.
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.