Patients unite to power FSHD research through new national registry
NCT ID NCT07409142
Summary
BetterLife FSHD is a patient-driven registry and online platform for people with Facioscapulohumeral Muscular Dystrophy (FSHD). It aims to collect health and experience data from up to 5,000 participants through regular surveys to help researchers better understand the disease. The platform also provides personalized resources and matches participants with relevant research opportunities, with the goal of improving future care and treatments.
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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