New FSHD registry aims to accelerate research through patient data
NCT ID NCT07409142
First seen Feb 14, 2026 · Last updated May 16, 2026 · Updated 12 times
Summary
This study is building a registry for people with facioscapulohumeral muscular dystrophy (FSHD). Participants share their health experiences and data through surveys, which researchers use to better understand the disease and work toward improved treatments. Anyone in the U.S. with an FSHD diagnosis or symptoms, including children as young as 1 year old, can join.
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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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FSHD Society
RECRUITINGRandolph, Massachusetts, 02368, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Conditions
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