Improving resources for myotonic dystrophy and facioscapulohumeral muscular dystrophy
Official title: Scientific Resource Core
Funded at University of Florida · NIH-10992314 · Data updated 2026-11-12
This study is all about helping people with myotonic dystrophy and facioscapulohumeral muscular dystrophy by improving a registry that collects important information from patients to support research and find better treatments together.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Florida NIH-funded |
| Lab location | 1 site (Gainesville, United States) |
| Project start | August 15, 2024 |
| Project end | July 31, 2028 |
| Funding year | 2024 |
| Award (this year) | $208,735 |
| NIH project number | 1P50NS132955-01A1 |
| Project ID | NIH-10992314 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are individuals diagnosed with myotonic dystrophy type 1 or type 2, or facioscapulohumeral muscular dystrophy.
✕Less likely to help
Patients with other unrelated muscular dystrophies or those not diagnosed with the specified conditions may not benefit from this research.
What this research studies
This research focuses on enhancing the resources available for patients with myotonic dystrophy (DM) and facioscapulohumeral muscular dystrophy (FSHD). It aims to sustain and improve the National Registry for DM and FSHD, which collects patient-reported data and medical records to support clinical studies and trials. By tracking disease progression through annual surveys and facilitating patient recruitment for research, this initiative seeks to foster collaboration among patients, families, clinicians, and researchers. The ultimate goal is to accelerate the development of effective therapies for these conditions.
Why it matters
Potential benefit: If successful, this research could lead to improved access to clinical trials and better therapeutic options for patients with myotonic dystrophy and FSHD.
How similar studies have gone: Previous research has successfully utilized patient registries to enhance recruitment and data collection for similar muscular dystrophy conditions.
Where this research is happening
-
University of Florida
Gainesville, United States Active
Researchers
- Principal investigator: Hamel, Johanna — University of Florida
- Study coordinator: Hamel, Johanna
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.