Online registry for myotonic dystrophy patients

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

The Myotonic Dystrophy Family Registry (MDFR) is an online platform where patients with myotonic dystrophy can enter their information, including symptoms and demographics. This registry aims to assist researchers in developing new treatments and identifying participants for clinical trials. By allowing community members to explore anonymous data, it enhances understanding of the myotonic dystrophy community and supports the improvement of treatment strategies. The MDFR is the first of its kind focused on myotonic dystrophy, providing valuable insights into the condition.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Diagnosed with congenital, juvenile-onset or adult onset DM1 or DM2 (confirmed by clinical exam or genetic test)

Exclusion Criteria:

* Not diagnosed with DM, unaffected family members

Where it's running

• Myotonic Dystrophy Foundation
  Oakland, California, United States Recruiting

Study contacts

• Study coordinator: Sofia Olmos, PhD
• Email: coordinator@myotonicregistry.org
• Phone: 415-800-7777

Similar studies

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

• Registry for Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy

  This study is creating a registry for people with myotonic dystrophy or facioscapulohumeral muscular dystrophy to share their health information and connect with researchers working to learn more about these conditions.

  Recruiting University of Rochester · Rochester, New York · NCT00082108

• 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

• 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.

  Recruiting Virginia Commonwealth University · Richmond, Virginia · NCT07700225

• 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

• Assessing Readiness and Endpoints for Pediatric Myotonic Dystrophy

  This study is trying to improve how we understand and measure the effects of congenital and childhood myotonic dystrophy to help create better treatments for kids with these conditions.

  Recruiting Virginia Commonwealth University · Little Rock, Arkansas and 3 other locations · NCT06747884

• Metformin to improve muscle strength in myotonic dystrophy type 1

  This will test whether taking metformin can improve muscle strength and daily function in adults with myotonic dystrophy type 1 who can still walk.

  Recruiting Phase 3 Assistance Publique - Hôpitaux de Paris · Garches · NCT05532813

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.