Join the fight: registry links muscle disease patients with researchers

NCT ID NCT00082108

First seen Nov 01, 2025 · Last updated May 27, 2026 · Updated 35 times

Summary

This study creates a registry for people with myotonic dystrophy (DM) or facioscapulohumeral muscular dystrophy (FSHD) and their family members. The goal is to connect them with researchers to help study these inherited muscle-weakening diseases. Up to 3,000 participants will share information to advance research and improve understanding.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • University of Rochester Medical Center, Department of Neurology

    RECRUITING

    Rochester, New York, 14642, United States

    Contact

    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

Conditions

Explore the condition pages connected to this study.