CDC National Spina Bifida Patient Registry
Centers for Disease Control and Prevention National Spina Bifida Patient Registry
This registry collects health and treatment information from people with spina bifida to help improve care and services for the condition.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Ut Southwestern Medical Center NIH-funded |
| Lab location | 1 site (Dallas, United States) |
| Project ID | NIH-11422059 on NIH RePORTER |
What this research studies
If you join, the registry collects your medical history, treatments, and follow-up information from your clinic into a secure, standardized database used by clinicians and public-health teams. Data come from many participating centers across the U.S., including long-running pediatric programs like the Spina Bifida Program at Texas Scottish Rite Hospital in Dallas, which follows hundreds of families. Researchers and clinicians use the combined, de-identified data to spot patterns, track long-term outcomes, and produce reports and publications that can change care practices. Enrollment usually happens through your treating clinic and may include periodic updates from medical records and brief patient questionnaires.
Who could benefit from this research
Good fit: People of any age with spina bifida or myelomeningocele who receive care at a participating clinic and are willing to share medical records and follow-up information are ideal candidates.
Not a fit: People without spina bifida, those not treated at participating centers, or those unwilling to share medical information or follow-up details are unlikely to directly benefit from participation.
Why it matters
Potential benefit: If successful, the registry could lead to clearer care guidelines, better-targeted services, and improved long-term outcomes for people with spina bifida.
How similar studies have performed: Long-running patient registries for spina bifida and other conditions have produced publications and helped identify care gaps and best practices, and this registry builds on that established approach.
Where this research is happening
Dallas, United States
- Ut Southwestern Medical Center — Dallas, United States (Active)
Researchers
- Principal investigator: Adams, Richard C. — Ut Southwestern Medical Center
- Study coordinator: Adams, Richard C.
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.