Spina Bifida Registry for Better Clinic Care
Official title: Woodward CDC NSBPR Registry 2018
Funded at Cincinnati Childrens Hosp Med Ctr · NIH-11616587 · Data updated 2026-11-12
A national registry project aims to improve care for people with spina bifida by collecting and sharing data from multidisciplinary clinics to guide evidence-based practices.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Cincinnati Childrens Hosp Med Ctr NIH-funded |
| Lab location | 1 site (Cincinnati, United States) |
| Project start | September 1, 2019 |
| Project end | August 31, 2027 |
| Funding year | 2023 |
| Award (this year) | $130,000 |
| NIH project number | 6U01DD001279-05M006 |
| Project ID | NIH-11616587 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals with spina bifida who participate in multidisciplinary clinics and contribute data to the NSBPR registry.
✕Less likely to help
Some patients may not directly benefit if their care location does not adopt standardized practices or if data collection does not translate to changes at their clinic.
What this research studies
This project tracks health information from spina bifida clinics over time to identify which care practices lead to better health, independence, and quality of life. Researchers will analyze patterns in clinic care, complications, and outcomes to pinpoint effective strategies. Results will be used to standardize care and help clinics deliver timely, cost-effective interventions across the lifespan.
Why it matters
Potential benefit: If successful, patients with spina bifida could receive more consistent, evidence-based care that improves health and life participation.
How similar studies have gone: The NSBPR has established data collection and dissemination efforts, but practice variation persists, indicating room for improved translation into care.
Where this research is happening
-
Cincinnati Childrens Hosp Med Ctr
Cincinnati, United States Active
Researchers
- Principal investigator: Adams, Ryan E — Cincinnati Childrens Hosp Med Ctr
- Study coordinator: Adams, Ryan E
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.