This registry is for people with Myotonic Dystrophy (DM) or Facioscapulohumeral Muscular Dystrophy (FSHD), or unaffected family members of someone with these conditions. It aims to connect you with researchers studying these inherited disorders, which cause progressive muscle weakness. By joining, you'll have the opportunity to participate in research focused on DM and FSHD. The main goal is to understand how your symptoms change over time, which will help scientists learn more about these diseases and share their findings with patients and healthcare providers. This registry is currently open for enrollment and plans to include 3000 participants.

Study design

This is an observational study, meaning researchers will collect information about your health over time without providing any specific treatment. It aims to enroll 3000 participants.

What's involved

You would complete an application packet, which includes a patient information form, a medical records release form, and an informed consent form. After enrolling, you would complete an annual update form to track changes in your symptoms.

Compensation

Not stated in the trial record.

Follow-up

You would complete an annual update form to help track how your symptoms change over time.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.