The National Spina Bifida Patient Registry at University of Pittsburgh
Official title: The National Spina Bifida Patient Registry at the University of Pittsburgh
Funded at University of Pittsburgh at Pittsburgh · NIH-11621295 · Data updated 2026-11-12
A national registry project at the University of Pittsburgh aims to collect and organize information about people with spina bifida to improve care.
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, 2027 |
| Funding year | 2023 |
| Award (this year) | $129,574 |
| NIH project number | 6U01DD001280-05M006 |
| Project ID | NIH-11621295 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals with spina bifida who contribute data to the registry or whose data may be included in registry analyses.
✕Less likely to help
Patients not enrolled in or contributing to the registry may not directly benefit from the study.
What this research studies
This grant supports ongoing data collection and management for a spina bifida patient registry led by the University of Pittsburgh. It involves coordinating data from multiple sites, ensuring quality data, and enabling researchers and clinicians to analyze trends in patient outcomes. The goal is to help doctors tailor care and identify gaps in treatment for people living with spina bifida.
Why it matters
Potential benefit: If successful, patients with spina bifida could receive more personalized care informed by real-world data.
How similar studies have gone: Other disease registries have improved understanding of patient outcomes and care patterns, though registry-specific results may vary.
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
UMPIRE Protocol: Improving Kidney Health for Children with Spina Bifida
A long-term plan to standardize how doctors care for babies and young kids with spina bifida to protect their kidney function.
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.