CDC National Spina Bifida Patient Registry
Official title: Centers for Disease Control and Prevention National Spina Bifida Patient Registry
Funded at Ut Southwestern Medical Center · NIH-11422059 · Data updated 2026-11-12
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 start | September 1, 2019 |
| Project end | August 31, 2026 |
| Funding year | 2023 |
| Award (this year) | $80,000 |
| NIH project number | 6U01DD001262-05M002 |
| Project ID | NIH-11422059 on NIH RePORTER |
Who could benefit from this research
✓Could help
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.
✕Less likely to help
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.
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.
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 gone: 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
-
Ut Southwestern Medical Center
Dallas, United States Active
Researchers
- Principal investigator: Adams, Richard C. — Ut Southwestern Medical Center
- Study coordinator: Adams, Richard C.
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.
-
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.
-
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.