Improving care and outcomes for people with Spina Bifida through a national registry
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-11616592 · Data updated 2026-11-12
A long-term project uses a national health registry to understand and improve care for people 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, 2027 |
| Funding year | 2023 |
| Award (this year) | $130,000 |
| NIH project number | 6U01DD001237-05M004 |
| Project ID | NIH-11616592 on NIH RePORTER |
Who could benefit from this research
✓Could help
Children and adults diagnosed with spina bifida who receive care at participating clinics and contribute longitudinal data.
✕Less likely to help
Patients who do not receive care at participating clinics or who do not consent to longitudinal data collection may not benefit directly.
What this research studies
This project continues to collect and analyze longitudinal data from both pediatric and adult patients with spina bifida to identify which treatments and care plans lead to better outcomes. By comparing different clinics and interventions, researchers aim to highlight best practices and tailor care to individuals over time. The effort relies on ongoing participation from clinics and patients to build a comprehensive picture of how spina bifida affects health and quality of life across the lifespan.
Why it matters
Potential benefit: Could lead to clearer guidance on best practices and better overall care for people living with spina bifida.
How similar studies have gone: Prior NSBPR analyses have produced published neurosurgical and clinical insights, showing that registry-based research can yield meaningful findings.
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.
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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.
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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.
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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.
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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.
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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.