National Spina Bifida Patient Registry at Boston Children’s Hospital
Official title: COMP B-NATIONAL SB PATIENT REGISTRY AT THE BOSTON CHILDRENS HOSPITAL
Funded at Boston Children's Hospital · NIH-11616582 · Data updated 2026-11-12
A patient-focused registry project at Boston Children’s Hospital will collect and study information from people with spina bifida to improve care and outcomes.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Boston Children's Hospital NIH-funded |
| Lab location | 1 site (Boston, United States) |
| Project start | September 1, 2019 |
| Project end | August 31, 2027 |
| Funding year | 2023 |
| Award (this year) | $130,000 |
| NIH project number | 6U01DD001266-05M005 |
| Project ID | NIH-11616582 on NIH RePORTER |
Who could benefit from this research
✓Could help
People diagnosed with spina bifida who receive care at participating clinics or may eventually contribute data.
✕Less likely to help
Patients not connected to participating clinics or who do not consent to share their information may not benefit from the registry.
What this research studies
This project creates a National Spina Bifida Patient Registry to gather long-term data from clinics across the U.S. about interventions, outcomes, and quality of care. It builds on BCH’s long history with spina bifida care to centralize information from multiple sites. The registry aims to identify patterns that can guide better coordinated care among specialists for individuals living with spina bifida.
Why it matters
Potential benefit: If successful, the registry could lead to more consistent, higher-quality care and better outcomes for people living with spina bifida.
How similar studies have gone: Registries for other conditions have improved care coordination and informed best practices, supporting the potential value of this approach.
Where this research is happening
-
Boston Children's Hospital
Boston, United States Active
Researchers
- Principal investigator: Mcnamara, Erin — Boston Children's Hospital
- Study coordinator: Mcnamara, Erin
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.