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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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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