Improving Care and Outcomes for People Living 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-11616605 · Data updated 2026-11-12
A patient-friendly project aims to improve how people with spina bifida are cared for and how well they do over time.
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, 2027 |
| Funding year | 2023 |
| Award (this year) | $41,697 |
| NIH project number | 6U01DD001282-05M004 |
| Project ID | NIH-11616605 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals living with spina bifida who receive routine care and follow-up at participating sites.
✕Less likely to help
Patients not connected to participating care centers or those outside the study’s scope may not directly benefit.
What this research studies
This grant supports a team at the University of Utah to develop better ways to manage spina bifida and track outcomes in people living with the condition. It uses clinical data and collaboration with clinicians to identify gaps in care and test changes that could improve daily living, mobility, and overall health. The work focuses on translating findings into practical care improvements that patients and families can experience in real-world settings.
Why it matters
Potential benefit: If successful, patients with spina bifida could have clearer care plans and better health outcomes.
How similar studies have gone: Previous research in spina bifida has shown that coordinated care and outcome tracking can improve health and life quality, though this project seeks to build on that with new approaches.
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.
-
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.
-
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.
-
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.
-
UMPIRE Protocol: Improving Kidney Health for Children with Spina Bifida
A long-term plan to standardize how doctors care for babies and young kids with spina bifida to protect their kidney function.
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.