Join the fight: new registry connects muscle disease patients with researchers
NCT ID NCT00082108
First seen Nov 01, 2025 · Last updated May 01, 2026 · Updated 31 times
Summary
This study creates a national registry for people with myotonic dystrophy (DM) or facioscapulohumeral muscular dystrophy (FSHD) and their family members. The goal is to connect patients with researchers to speed up understanding of these inherited muscle-weakening diseases. Participants will be invited to take part in future studies. No treatment is given; this is a way to help science learn more.
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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.
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
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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University of Rochester Medical Center, Department of Neurology
RECRUITINGRochester, New York, 14642, United States
Contact
Contact
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact
Conditions
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