Remote monitoring and genetic analysis for myotonic dystrophy type 1

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study enrolls adults (18–88) with a clinical diagnosis of DM1 and collects remote physiological and functional data from participants' homes using a mailed toolkit and video visits. Investigators will gather information on skeletal and smooth muscle function, cardiac measures, and nervous system findings through virtual assessments and device-based tests. Participants also provide a blood sample so researchers can analyze genetic differences that may relate to symptom variability. No travel to a study site is required, but participants need Wi‑Fi, the ability to consent, and English proficiency.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Age 18-88 years
* Clinical diagnosis of DM1
* English speaking
* Able to provide informed consent
* Available wifi

Where it's running

• University of Rochester
  Rochester, New York, United States Recruiting

Study contacts

• Principal investigator: Johanna Hamel, MD — University of Rochester
• Study coordinator: Jeanne Dekdebrun
• Email: REACHDM@URMC.rochester.edu
• Phone: 585-275-0420

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Understanding long-term progression in myotonic dystrophy type 1 (DM1)

  This study will follow adults with DM1 for at least four years to see how walking, hand function, muscle strength, heart rhythms, and lung function change over time.

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• Zeleciment Basivarsen (DYNE-101) for people with myotonic dystrophy type 1

  This trial will test whether Zeleciment Basivarsen (DYNE-101) improves symptoms and is safe and tolerable for adults with myotonic dystrophy type 1.

  Recruiting at 44 sites Phase 3 Dyne Therapeutics · La Jolla, California and 43 other locations · NCT07486934

• Spanish National Registry for Myotonic Dystrophy Type 1

  This registry gathers health, clinical, and genetic information from people in Spain with DM1 to see how the condition changes over time and help match patients to future trials.

  Recruiting at 8 sites Fundació Institut Germans Trias i Pujol · Multiple Locations, Andalusia and 7 other locations · NCT07385443

• Personalized exercise treatment for adults with rare neuromuscular disorders

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  Recruiting at 2 sites Oslo University Hospital · Bergen and 4 other locations · NCT06708468

• Identifying biomarkers and clinical endpoints in Myotonic Dystrophy Type 1

  This study is trying to learn more about Myotonic Dystrophy Type 1 by looking at how the disease affects around 700 adults over two years, including their muscle health and daily activities.

  Recruiting at 15 sites Virginia Commonwealth University · La Jolla, California and 16 other locations · NCT03981575

• Remote Assessments and Genetic Factors in Congenital and Childhood DM1

  This study tests how congenital, childhood, and juvenile DM1 affect kids by doing remote visits, activities, and a small blood sample to explore symptoms and genetics.

  Recruiting University of Rochester · Rochester, New York · NCT07630389

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.