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

NCT ID NCT00082108

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This registry aims to connect people diagnosed with myotonic dystrophy (DM) or facioscapulohumeral muscular dystrophy (FSHD) with researchers. By joining, participants help scientists better understand these inherited muscle-weakening diseases and develop future treatments. The registry is open to patients and their unaffected family members.

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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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Conditions

The condition(s) this trial relates to.

congenital myotonic dystrophy facioscapulohumeral muscular dystrophy muscular dystrophy myotonic dystrophy myotonic dystrophy type 1 myotonic dystrophy type 2

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

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