University of Pittsburgh Spina Bifida Patient Registry
Official title: The National Spina Bifida Patient Registry at the University of Pittsburgh
Funded at University of Pittsburgh at Pittsburgh · NIH-11403047 · Data updated 2026-11-12
This registry gathers health information from people with spina bifida to help improve care and future treatments.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Pittsburgh at Pittsburgh NIH-funded |
| Lab location | 1 site (Pittsburgh, United States) |
| Project start | September 1, 2019 |
| Project end | August 31, 2026 |
| Funding year | 2023 |
| Award (this year) | $79,467 |
| NIH project number | 6U01DD001280-05M004 |
| Project ID | NIH-11403047 on NIH RePORTER |
Who could benefit from this research
✓Could help
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.
✕Less likely to help
Individuals without spina bifida or those who cannot access participating clinics are unlikely to gain direct benefit from this registry.
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.
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 gone: 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
-
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.
Related research
Other NIH-funded projects on the same topics.
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Improving care and outcomes for people living with spina bifida in Wisconsin
A patient-friendly project aims to improve everyday care and health outcomes for people with spina bifida in Wisconsin.
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The National Spina Bifida Patient Registry at University of Pittsburgh
A national registry project at the University of Pittsburgh aims to collect and organize information about people with spina bifida to improve care.
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Improving Care and Outcomes for People Living with Spina Bifida
A patient-friendly project aims to improve how people with spina bifida are cared for and how well they do over time.
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Scoliosis and neurosurgical factors in myelomeningocele: a clinic registry study
This project uses registry data from Penn State’s Spina Bifida Clinic to understand how brain and spine-related issues influence when and why scoliosis surgery is needed in people with myelomeningocele.
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UMPIRE: Better Urologic Care for Babies with Spina Bifida
This grant tests how to best protect kidney function in newborns with spina bifida by comparing and refining urologic care practices across multiple hospitals.
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Spina Bifida Collaborative Care Network to Improve Outcomes
A national program is expanding coordinated care networks and a patient registry to help people with Spina Bifida get better, more consistent care.
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.