Registry and management of young children with spina bifida
National Spina Bifida Patient Registry and Urologic Management of Young Children with Spina Bifida - Component B
This study is working to create a national registry for kids with spina bifida to help doctors provide better care for their bladder and urinary health, and it will involve families to make sure their needs and experiences are taken into account.
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 ID | NIH-11141534 on NIH RePORTER |
What this research studies
This research focuses on creating a national registry for children with spina bifida to improve their urologic management. By collecting and analyzing data from various patients, the project aims to identify best practices and treatment outcomes. The approach involves collaboration among healthcare providers to standardize care and enhance the quality of life for affected children. Families of children with spina bifida will be engaged to ensure that their experiences and needs are reflected in the management strategies developed.
Who could benefit from this research
Good fit: Ideal candidates for this research are young children diagnosed with spina bifida and their families.
Not a fit: Patients without a diagnosis of spina bifida or those who are older than the targeted age group may not receive benefits from this research.
Why it matters
Potential benefit: If successful, this research could lead to improved urologic care and better health outcomes for children with spina bifida.
How similar studies have performed: Similar research initiatives have shown success in improving care for children with chronic conditions through registry-based approaches.
Where this research is happening
Durham, United States
- Duke University — Durham, United States (Active)
Researchers
- Principal investigator: Wiener, John Samuel — Duke University
- Study coordinator: Wiener, John Samuel
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 below.