An observational study in Myotonic Dystrophy Type 1, sponsored by Massachusetts General Hospital. Recruiting at 1 site in United States. Open to participants aged 14 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2026-11-03.
Sponsored by Massachusetts General Hospital · Observational
Current methods of measuring the response to new treatments for muscular dystrophies involve the examination of small pieces of muscle tissue called biopsies. The investigators are interested in finding less invasive methods that reduce the need for muscle biopsies. The purpose of this research is to learn about the possibility of detecting and measuring the activity and severity of myotonic dystrophy by examining a urine sample and a blood sample, and performing muscle function testing. The information that is gathered from this study may help to evaluate, prevent, diagnose, treat, and improve the understanding of human myotonic dystrophy.
127 studies on the registry are indexed under Myotonic Dystrophy; 51 are open to participants now.
This study's planned enrollment of 64 is below the median of 100 across 58 observational studies indexed under Myotonic Dystrophy.
Browse Myotonic Dystrophy studies →Massachusetts General Hospital is the lead sponsor of 2,584 studies on the registry; 448 are open to participants now.
Of its 221 completed or terminated interventional studies of FDA-regulated products, 168 (76%) have results posted.
Counted across the registry records on this site, refreshed daily.
Individuals with myotonic dystrophy Individuals without myotonic dystrophy
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Exclusion Criteria:
Extracellular vesicle metabolite profile
The extracellular vesicle metabolite profile in the myotonic dystrophy group will be evaluated and compared with the extracellular vesicle metabolite profile in the control group. Statistical analysis will be used to evaluate the sensitivity and specificity of these markers as measurements of disease activity and severity.
Time frame: Five years
From the registry record's own update history. This site started tracking changes on Sep 25, 2026; for anything earlier, see the record history on ClinicalTrials.gov ↗
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