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 - 2019
Funded at University of Utah · NIH-11141530 · Data updated 2026-11-12
This study is all about finding better ways to care for people with Spina Bifida by working with patients, families, and doctors to create personalized care plans that improve health and well-being.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Utah NIH-funded |
| Lab location | 1 site (Salt Lake City, United States) |
| Project start | September 1, 2019 |
| Project end | August 31, 2025 |
| Funding year | 2023 |
| Award (this year) | $24,999 |
| NIH project number | 6U01DD001282-05M001 |
| Project ID | NIH-11141530 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are individuals diagnosed with Spina Bifida of all ages.
✕Less likely to help
Patients with conditions unrelated to Spina Bifida may not receive any benefit from this research.
What this research studies
This research focuses on enhancing the quality of care and health outcomes for individuals living with Spina Bifida. It aims to identify effective strategies and interventions that can be implemented in clinical settings to better support patients. The approach may involve collaboration with healthcare providers, patients, and families to gather insights and develop tailored care plans. By analyzing existing practices and outcomes, the research seeks to establish best practices for managing this condition.
Why it matters
Potential benefit: If successful, this research could lead to improved health outcomes and quality of life for individuals with Spina Bifida.
How similar studies have gone: While there have been various initiatives aimed at improving care for chronic conditions, the specific approaches for Spina Bifida may be novel and underexplored.
Where this research is happening
-
University of Utah
Salt Lake City, United States Active
Researchers
- Principal investigator: Wallis, Chad — 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.
-
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.
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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.