Spina bifida patient registry (CDC, 2018)
Woodward CDC NSBPR Registry 2018
This project collects health and care information from people with spina bifida to find clinic practices that lead to better long-term health and quality of life.
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 ID | NIH-11423393 on NIH RePORTER |
What this research studies
From a patient's point of view, this registry gathers regular health and care data from multidisciplinary spina bifida clinics across the United States. Clinics enter standardized information about diagnoses, treatments, surgeries, complications, and quality-of-life measures over time. Researchers analyze these longitudinal records to identify care patterns linked with fewer complications, better community participation, and lower costs. Results are shared with clinics to help standardize and improve care for people living with spina bifida.
Who could benefit from this research
Good fit: Ideal candidates are people with spina bifida of any age who receive care at participating multidisciplinary spina bifida clinics and agree to have their health data included.
Not a fit: People without spina bifida, or those who do not receive care at participating clinics or opt out of data sharing, will not directly benefit from this registry.
Why it matters
Potential benefit: If successful, this work could help clinics adopt proven care practices that reduce complications, support independence, and lower health care costs for people with spina bifida.
How similar studies have performed: The CDC's National Spina Bifida Patient Registry has been active since 2008 and has produced useful insights, so this project builds on an established and productive effort.
Where this research is happening
Cincinnati, United States
- 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 below.