Better care and outcomes for people with spina bifida
Official title: Research Approaches to Improve the Care and Outcomes of People Living with Spina Bifida - 2019
Funded at Utah State Higher Education System--University of Utah · NIH-11403049 · Data updated 2026-11-12
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 start | September 1, 2019 |
| Project end | August 31, 2026 |
| Funding year | 2023 |
| Award (this year) | $25,000 |
| NIH project number | 6U01DD001282-05M002 |
| Project ID | NIH-11403049 on NIH RePORTER |
Who could benefit from this research
✓Could help
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.
✕Less likely to help
People without spina bifida, or those unable to access participating centers or complete study activities, are unlikely to receive direct benefit from this program.
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.
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 gone: 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
-
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
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.
-
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.