National registry for patients with Spina Bifida at Boston Children's Hospital
COMP B-NATIONAL SB PATIENT REGISTRY AT THE BOSTON CHILDRENS HOSPITAL
This study is creating a national registry for people with Spina Bifida to help improve their care by gathering information from different clinics, so that everyone can get the best treatment possible from a team of specialists who understand their unique needs.
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-11141532 on NIH RePORTER |
What this research studies
This research aims to establish a national registry for individuals living with Spina Bifida (SB) to improve their care and outcomes. By collecting and analyzing longitudinal data from various clinics across the United States, the registry will help identify differences in interventions and clinical outcomes. Patients will benefit from a coordinated approach to care that involves multiple specialists, ensuring they receive comprehensive treatment tailored to their needs. The Boston Children's Hospital, with its extensive experience and large patient population, will play a key role in this initiative.
Who could benefit from this research
Good fit: Ideal candidates for this research include individuals diagnosed with Spina Bifida, regardless of age, who are receiving care at participating clinics.
Not a fit: Patients without a diagnosis of Spina Bifida or those receiving care outside of the participating clinics may not benefit from this research.
Why it matters
Potential benefit: If successful, this research could lead to improved care strategies and better health outcomes for patients with Spina Bifida.
How similar studies have performed: Previous research has shown success in establishing patient registries for chronic conditions, indicating that this approach could be beneficial for Spina Bifida as well.
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.