Better care and outcomes for people with spina bifida
Research Approaches to Improve the Care and Outcomes of People Living with Spina Bifida - 2019
This program develops and puts into practice improved care approaches and supports to help people with spina bifida stay healthier and more independent.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Utah State Higher Education System--University of Utah NIH-funded |
| Lab location | 1 site (Salt Lake City, United States) |
| Project ID | NIH-11403049 on NIH RePORTER |
What this research studies
This cooperative program brings together clinics, researchers, and people with spina bifida to find gaps in care and try practical solutions across the lifespan. The team collects health information from medical records, patient surveys, and registries and may pilot new clinic care models or rehabilitation approaches. Patients and families will help shape new care guidelines, outcome measures, and tools that address bowel, bladder, mobility, and mental health needs. The overall aim is more coordinated, effective care from childhood into adulthood.
Who could benefit from this research
Good fit: Ideal candidates are children, teens, or adults living with spina bifida who can attend participating clinics or participate in surveys and share health information as requested.
Not a fit: People without spina bifida, or those unable to access participating centers or complete study activities, are unlikely to receive direct benefit from this program.
Why it matters
Potential benefit: If successful, the work could produce clearer care guidelines, reduce complications, and improve quality of life for people with spina bifida.
How similar studies have performed: Multi-center registries and care-network efforts for spina bifida and related conditions have previously improved care coordination, and this program builds on those proven approaches while testing new models.
Where this research is happening
Salt Lake City, United States
- Utah State Higher Education System--University of Utah — Salt Lake City, United States (Active)
Researchers
- Principal investigator: Wallis, Chad — Utah State Higher Education System--University of Utah
- Study coordinator: Wallis, Chad
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.