Improving care and outcomes for people with spina bifida
Research Approaches to Improve the Care and Outcomes of People Living with Spina Bifida- Component B
Collecting long-term clinic information to help doctors improve care and health for children and adults with spina bifida.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Alabama at Birmingham NIH-funded |
| Lab location | 1 site (Birmingham, United States) |
| Project ID | NIH-11400840 on NIH RePORTER |
What this research studies
You would have your clinic visits and health information entered into the National Spina Bifida Patient Registry so researchers can follow outcomes over time. The UAB pediatric and adult multidisciplinary clinics record treatments, surgeries, and health measures and compare results across participating centers. De-identified registry data are used to identify which care practices lead to better outcomes and to publish findings that can inform clinical care. UAB has enrolled hundreds of pediatric and adult patients since the registry began and uses these longitudinal records to study long-term impacts of different treatments.
Who could benefit from this research
Good fit: Children and adults living with spina bifida who receive care at UAB or another participating NSBPR clinic are ideal candidates for enrollment.
Not a fit: People without spina bifida or those not seen at participating clinics are unlikely to benefit directly, and registry enrollment does not promise immediate changes to an individual's treatment.
Why it matters
Potential benefit: If successful, the project could identify better care practices and improve long-term health, independence, and quality of life for people with spina bifida.
How similar studies have performed: The National Spina Bifida Patient Registry has already supported many published studies, including neurosurgical papers from UAB, showing registry data can produce useful findings over time.
Where this research is happening
Birmingham, United States
- University of Alabama at Birmingham — Birmingham, United States (Active)
Researchers
- Principal investigator: Joseph, David B — University of Alabama at Birmingham
- Study coordinator: Joseph, David B
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.