A registry for patients with spina bifida.
Centers for Disease Control and Prevention National Spina Bifida Patient Registry
This study is all about building a helpful resource for people with spina bifida/myelomeningocele, so they can get better care and support tailored just for them, with the help of doctors and health experts.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Ut Southwestern Medical Center NIH-funded |
| Lab location | 1 site (Dallas, United States) |
| Project ID | NIH-11140259 on NIH RePORTER |
What this research studies
This research focuses on creating a comprehensive registry for individuals with spina bifida/myelomeningocele to improve the delivery of holistic care. It involves collaboration among experts in the field, including clinicians and public health agencies, to ensure best practice standards are met. The registry collects data and outcomes to enhance the understanding and management of spina bifida, ultimately aiming to improve patient care and services. Families engaged in the program will have access to a wide range of services tailored to their needs.
Who could benefit from this research
Good fit: Ideal candidates for this research are individuals diagnosed with spina bifida or myelomeningocele, along with their families.
Not a fit: Patients without a diagnosis of spina bifida or those who do not reside in the service area may not benefit from this research.
Why it matters
Potential benefit: If successful, this research could lead to improved care and outcomes for patients with spina bifida.
How similar studies have performed: Previous research has shown success in similar registries, indicating that this approach can effectively enhance patient care.
Where this research is happening
Dallas, United States
- Ut Southwestern Medical Center — Dallas, United States (Active)
Researchers
- Principal investigator: Adams, Richard C. — Ut Southwestern Medical Center
- Study coordinator: Adams, Richard C.
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.