Join the fight: new registry connects muscle disease patients with scientists

NCT ID NCT00082108

First seen Nov 01, 2025 · Last updated May 15, 2026 · Updated 33 times

Summary

This registry aims to connect people diagnosed with myotonic dystrophy or facioscapulohumeral muscular dystrophy, along with their family members, with researchers studying these inherited muscle-weakening diseases. By joining, participants help scientists better understand the conditions and develop better treatments. The study does not test any new drugs or therapies—it simply collects information to support future research.

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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.