University of Pittsburgh Spina Bifida Patient Registry
The National Spina Bifida Patient Registry at the University of Pittsburgh
['FUNDING_U01'] · UNIVERSITY OF PITTSBURGH AT PITTSBURGH · NIH-11403047
This registry gathers health information from people with spina bifida to help improve care and future treatments.
Quick facts
| Phase | ['FUNDING_U01'] |
|---|---|
| Study type | Nih_funding |
| Sex | All |
| Sponsor | UNIVERSITY OF PITTSBURGH AT PITTSBURGH (nih funded) |
| Locations | 1 site (PITTSBURGH, UNITED STATES) |
| Trial ID | NIH-11403047 on ClinicalTrials.gov |
What this research studies
You would share medical information, clinic records, and survey answers with a central registry that follows people with spina bifida over time. Participating clinics enter data on surgeries, therapies, complications, and quality-of-life measures. The registry links information from many patients to spot patterns in outcomes and care needs. Researchers and clinicians use those patterns to design better care practices and to identify candidates for future studies.
Who could benefit from this research
Good fit: People of any age with a diagnosis of spina bifida who receive care at or can connect with a participating clinic are the best candidates to join.
Not a fit: Individuals without spina bifida or those who cannot access participating clinics are unlikely to gain direct benefit from this registry.
Why it matters
Potential benefit: If successful, the registry could lead to clearer care guidelines, earlier detection of problems, and more targeted clinical trials for people with spina bifida.
How similar studies have performed: Patient registries for other conditions have successfully improved understanding of complications and care patterns, and national spina bifida registries have previously supported useful clinical findings.
Where this research is happening
PITTSBURGH, UNITED STATES
- UNIVERSITY OF PITTSBURGH AT PITTSBURGH — PITTSBURGH, UNITED STATES (ACTIVE)
Researchers
- Principal investigator: DICIANNO, BRAD E. — UNIVERSITY OF PITTSBURGH AT PITTSBURGH
- Study coordinator: DICIANNO, BRAD 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.