Collecting data to improve care for patients with spina bifida
Component B. National Spina Bifida Patient Registry (NSBPR)
This study is looking for people with spina bifida to share their health information so we can learn more about their needs and find ways to improve their care and quality of life.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Children's Hospital of Los Angeles NIH-funded |
| Lab location | 1 site (Los Angeles, United States) |
| Project ID | NIH-11140936 on NIH RePORTER |
What this research studies
This project aims to gather and analyze health data from individuals with spina bifida to better understand their needs and improve the quality of care they receive. By participating in the National Spina Bifida Patient Registry, the research will collect information on health status, treatments, and outcomes. This data will be used to enhance clinical practices and contribute to collaborative research efforts that focus on the spina bifida population. The ultimate goal is to optimize health and improve the overall quality of life for patients living with this condition.
Who could benefit from this research
Good fit: Ideal candidates for this research are individuals diagnosed with spina bifida, including those with myelomeningocele, lipomeningocele, and meningocele.
Not a fit: Patients without a diagnosis of spina bifida or those who do not wish to participate in registry data collection may not benefit from this research.
Why it matters
Potential benefit: If successful, this research could lead to improved clinical care and better health outcomes for patients with spina bifida.
How similar studies have performed: Previous research utilizing patient registries has shown success in improving care and outcomes for various conditions, indicating a promising approach for spina bifida as well.
Where this research is happening
Los Angeles, United States
- Children's Hospital of Los Angeles — Los Angeles, United States (Active)
Researchers
- Principal investigator: Smith, Kathryn a. Navarette — Children's Hospital of Los Angeles
- Study coordinator: Smith, Kathryn a. Navarette
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.