Improving care and outcomes for people living with spina bifida in Wisconsin
Official title: Research Approaches to Improving the Care and Outcomes of People Living with Spina Bifida in Wisconsin: The NSBPR
Funded at Children's Hospital of Wisconsin · NIH-11629313 · Data updated 2026-11-12
A patient-friendly project aims to improve everyday care and health outcomes for people with spina bifida in Wisconsin.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Children's Hospital of Wisconsin NIH-funded |
| Lab location | 1 site (Milwaukee, United States) |
| Project start | September 1, 2019 |
| Project end | August 31, 2027 |
| Funding year | 2019 |
| Award (this year) | $130,000 |
| NIH project number | 6U01DD001240-05M005 |
| Project ID | NIH-11629313 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals living with spina bifida in Wisconsin who receive care through participating centers and providers.
✕Less likely to help
People not connected to participating clinics or who do not have spina bifida may not directly benefit.
What this research studies
This grant supports a coordinated effort to collect and analyze how spina bifida affects individuals in Wisconsin and to use that information to guide better clinical care. It partners with hospitals and clinics to identify practical ways to prevent complications, improve mobility and independence, and optimize health services. The team will work with patients, families, and clinicians to translate findings into clearer care guidelines and resources. The goal is to make care more predictable, timely, and person-centered for people living with spina bifida.
Why it matters
Potential benefit: If successful, patients with spina bifida could experience better health outcomes, fewer complications, and more personalized care plans.
How similar studies have gone: Other regional and national efforts in spina bifida care have shown improvements when standardized data collection informs clinical practice.
Where this research is happening
-
Children's Hospital of Wisconsin
Milwaukee, United States Active
Researchers
- Principal investigator: Roach, Audrey — Children's Hospital of Wisconsin
- Study coordinator: Roach, Audrey
Related research
Other NIH-funded projects on the same topics.
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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.
-
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.