Boston Children's Spina Bifida Patient Registry
COMP B-NATIONAL SB PATIENT REGISTRY AT THE BOSTON CHILDRENS HOSPITAL
Collects health information over time from people with spina bifida to help improve care across clinics nationwide.
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 ID | NIH-11422080 on NIH RePORTER |
What this research studies
You would be invited to join a registry at Boston Children's that gathers medical and treatment information from people with spina bifida. The registry collects longitudinal data from clinic visits, surgeries, therapies, and periodic surveys, and links records from different specialists caring for you. Data from many U.S. clinics are combined to compare practices and outcomes and to identify ways to improve care. Participation typically involves sharing medical records and allowing follow-up data to be added over time.
Who could benefit from this research
Good fit: People of any age living with spina bifida who receive care at Boston Children's or participating NSBPR clinics and who can share medical records and follow-up information.
Not a fit: People without spina bifida or those who do not want to share medical records or participate in follow-up are unlikely to benefit directly from joining.
Why it matters
Potential benefit: Could help identify better care practices and improve long-term outcomes for people living with spina bifida.
How similar studies have performed: This builds on the existing National Spina Bifida Patient Registry, which has contributed useful data for many years rather than testing an entirely new approach.
Where this research is happening
Boston, United States
- 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 below.