Tracking and analyzing muscular dystrophy across the United States
The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet): Component D-Data Coordinating Center
This study is all about keeping track of muscular dystrophy to better understand how it affects people’s health and lives, and it’s designed for anyone who has or cares about someone with this condition.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Research Triangle Institute NIH-funded |
| Lab location | 1 site (Research Triangle Park, United States) |
| Project ID | NIH-11174191 on NIH RePORTER |
What this research studies
This research focuses on the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet), which monitors various types of muscular dystrophy to understand their effects on public health and clinical outcomes. The project involves multiple sites across the U.S. that collect and analyze data over time, ensuring high-quality data management and security. By enhancing data collection methods and creating user-friendly tools, the research aims to improve the understanding of muscular dystrophies and their impact on patients and healthcare systems.
Who could benefit from this research
Good fit: Ideal candidates for this research include individuals diagnosed with any form of muscular dystrophy who are part of the population being monitored.
Not a fit: Patients with muscular dystrophy who are not part of the surveillance areas or those without a formal diagnosis may not benefit from this research.
Why it matters
Potential benefit: If successful, this research could lead to improved tracking and understanding of muscular dystrophies, ultimately enhancing patient care and treatment strategies.
How similar studies have performed: Previous research initiatives focused on muscular dystrophy surveillance have shown promise in improving data collection and patient outcomes, indicating that this approach is both relevant and potentially impactful.
Where this research is happening
Research Triangle Park, United States
- Research Triangle Institute — Research Triangle Park, United States (Active)
Researchers
- Principal investigator: Moore, Amy — Research Triangle Institute
- Study coordinator: Moore, Amy
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.