Gillette Children's participation in the National Spina Bifida Patient Registry
Official title: Participation of Gillette Children's Specialty Healthcare in the NSBPR
Funded at Gillette Children's Specialty Healthcare · NIH-11423382 · Data updated 2026-11-12
This project collects health and care information from children and adults with spina bifida seen at Gillette to help improve future care and outcomes.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Gillette Children's Specialty Healthcare NIH-funded |
| Lab location | 1 site (St. Paul, United States) |
| Project start | September 1, 2019 |
| Project end | August 31, 2026 |
| Funding year | 2023 |
| Award (this year) | $80,000 |
| NIH project number | 6U01DD001268-05M003 |
| Project ID | NIH-11423382 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates are children and adults who have a diagnosis of spina bifida and receive care at Gillette Children’s Specialty Healthcare or its affiliated clinics.
✕Less likely to help
People without spina bifida, those not treated at Gillette or unwilling to share medical information, and those seeking immediate therapeutic benefit should not expect direct clinical improvements from registry participation.
What this research studies
If you receive care for spina bifida at Gillette, clinicians will invite you to join a national registry that records medical history, treatments, surgeries, therapies, and outcomes over time. The registry pulls together data from Gillette’s hospital and specialty clinics so your information can be combined with other patients’ data. Participation involves sharing medical details and follow-up information during routine visits rather than extra experimental procedures. Your data help researchers spot what care approaches work best and where gaps in services exist.
Why it matters
Potential benefit: Contributing your information could lead to better-informed care guidelines, improved coordination among specialists, and better outcomes for people with spina bifida over time.
How similar studies have gone: National patient registries for spina bifida have previously produced useful findings and quality-improvement data, so this approach is established rather than untested.
Where this research is happening
-
Gillette Children's Specialty Healthcare
St. Paul, United States Active
Researchers
- Principal investigator: Cady, Rhonda G — Gillette Children's Specialty Healthcare
- Study coordinator: Cady, Rhonda G
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.