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
Funded at Baylor College of Medicine · NIH-11422047 · Data updated 2026-11-12
This project develops and compares care strategies to help people living with spina bifida have better health, function, and quality of life.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Baylor College of Medicine NIH-funded |
| Lab location | 1 site (Houston, United States) |
| Project start | September 1, 2019 |
| Project end | August 31, 2026 |
| Funding year | 2023 |
| Award (this year) | $80,000 |
| NIH project number | 6U01DD001265-05M003 |
| Project ID | NIH-11422047 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates are children and adults living with spina bifida, particularly those treated at or able to travel to participating spina bifida specialty centers or who can be enrolled in the National Spina Bifida Patient Registry.
✕Less likely to help
People who do not have spina bifida, or whose medical needs are unrelated to spinal neural tube defects, would not be expected to benefit directly from this project.
What this research studies
This multi-center effort follows people with spina bifida across childhood and into adulthood to understand what drives long-term outcomes. It uses data from clinical visits and the National Spina Bifida Patient Registry, along with targeted follow-up testing, to study neurosurgical, motor, urological, cognitive, and quality-of-life outcomes. The project compares outcomes after different prenatal myelomeningocele repair approaches (fetoscopic versus open) and looks for early risk factors that predict later challenges. The team also examines disparities in care and works to identify where changes in clinical practice could improve lifelong outcomes.
Why it matters
Potential benefit: If successful, this work could guide prenatal and lifelong care choices that improve mobility, bladder and bowel function, cognitive development, and overall quality of life for people with spina bifida.
How similar studies have gone: Previous registry and single-center reports have shown promising, comparable outcomes between fetoscopic and open prenatal repairs and have identified care disparities, but longer-term neurodevelopmental effects remain incompletely understood.
Where this research is happening
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Baylor College of Medicine
Houston, United States Active
Researchers
- Principal investigator: Jarosz, Susan — Baylor College of Medicine
- Study coordinator: Jarosz, Susan
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.
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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.