Improving care and outcomes for people with spina bifida
Research Approaches to Improve the Care and Outcomes of People Living with Spina Bifida
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 ID | NIH-11422047 on NIH RePORTER |
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.
Who could benefit from this research
Good fit: 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.
Not a fit: 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.
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 performed: 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
Houston, United States
- Baylor College of Medicine — Houston, United States (Active)
Researchers
- Principal investigator: Jarosz, Susan — Baylor College of Medicine
- Study coordinator: Jarosz, Susan
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.