National Spina Bifida Patient Registry and Urologic Care for Young Children (Component B)
Official title: National Spina Bifida Patient Registry and Urologic Management of Young Children with Spina Bifida - Component B
Funded at Duke University · NIH-11616600 · Data updated 2026-11-12
A national registry and coordinated care project will collect information on young children with spina bifida to guide better urologic management and overall care.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Duke University NIH-funded |
| Lab location | 1 site (Durham, United States) |
| Project start | September 1, 2019 |
| Project end | August 31, 2027 |
| Funding year | 2020 |
| Award (this year) | $130,000 |
| NIH project number | 6U01DD001278-05M004 |
| Project ID | NIH-11616600 on NIH RePORTER |
Who could benefit from this research
✓Could help
Young children diagnosed with spina bifida and their families who receive or may need urologic care.
✕Less likely to help
Children without spina bifida or those not involved in the registry may not directly benefit.
What this research studies
This grant supports a U01 project at Duke University to gather and organize data on young children with spina bifida to understand how urologic care affects outcomes. It involves standardized data collection across sites, with the goal of informing best practices for managing bladder and kidney health in early childhood. Clinicians and researchers will analyze the registry data to identify patterns that improve safety, quality of life, and long-term outcomes for patients and families.
Why it matters
Potential benefit: If successful, the registry could lead to more consistent, evidence-based urologic care for young children with spina bifida and improved health outcomes.
How similar studies have gone: Large patient registries have previously improved understanding of spina bifida care and informed practice guidelines.
Where this research is happening
-
Duke University
Durham, United States Active
Researchers
- Principal investigator: Wiener, John Samuel — Duke University
- Study coordinator: Wiener, John Samuel
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.
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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.