Improving care and outcomes for people with spina bifida
Official title: Research Approaches to Improve the Care and Outcomes of People Living with Spina Bifida- Component B
Funded at University of Alabama at Birmingham · NIH-11400840 · Data updated 2026-11-12
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 start | September 1, 2019 |
| Project end | August 31, 2026 |
| Funding year | 2023 |
| Award (this year) | $80,000 |
| NIH project number | 6U01DD001237-05M002 |
| Project ID | NIH-11400840 on NIH RePORTER |
Who could benefit from this research
✓Could help
Children and adults living with spina bifida who receive care at UAB or another participating NSBPR clinic are ideal candidates for enrollment.
✕Less likely to help
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.
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.
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 gone: 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
-
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
Related research
Other NIH-funded projects on the same topics.
-
Improving care and outcomes for people living with spina bifida in Wisconsin
A patient-friendly project aims to improve everyday care and health outcomes for people with spina bifida in Wisconsin.
-
The National Spina Bifida Patient Registry at University of Pittsburgh
A national registry project at the University of Pittsburgh aims to collect and organize information about people with spina bifida to improve care.
-
Improving Care and Outcomes for People Living with Spina Bifida
A patient-friendly project aims to improve how people with spina bifida are cared for and how well they do over time.
-
Scoliosis and neurosurgical factors in myelomeningocele: a clinic registry study
This project uses registry data from Penn State’s Spina Bifida Clinic to understand how brain and spine-related issues influence when and why scoliosis surgery is needed in people with myelomeningocele.
-
UMPIRE: Better Urologic Care for Babies with Spina Bifida
This grant tests how to best protect kidney function in newborns with spina bifida by comparing and refining urologic care practices across multiple hospitals.
-
Spina Bifida Collaborative Care Network to Improve Outcomes
A national program is expanding coordinated care networks and a patient registry to help people with Spina Bifida get better, more consistent care.
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.