RecruitingNCT00082108

Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry

National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members

Sponsor

University of Rochester

Enrollment

3,000 participants

Start Date

Sep 1, 2000

Study Type

OBSERVATIONAL

Conditions

Muscular Dystrophy Myotonic Dystrophy Type 1 Myotonic Dystrophy facioscapulohumeral muscular dystrophy Myotonic Dystrophy Type 2 Congenital Myotonic Dystrophy PROMM (Proximal Myotonic Myopathy)Steinert's Disease Myotonic Muscular Dystrophy

Summary

Myotonic dystrophy (DM) and facioscapulohumeral muscular dystrophy (FSHD) are inherited disorders characterized by progressive muscle weakness and loss of muscle tissue. The purpose of this registry is to connect people with DM or FSHD with researchers studying these diseases. The registry will offer individuals with DM and FSHD an opportunity to participate in research that focuses of their diseases. The registry will also help scientists to accomplish research on DM and FSHD and to distribute their findings to patients and care providers.

Eligibility

Plain Language Summary

Simplified for easier understanding

This clinical trial is studying a new treatment for people with congenital myotonic dystrophy, muscular dystrophy, and other related conditions. The study is currently recruiting participants at 1 location.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

Interested in this trial?

Get notified about updates and connect with the research team.