BetterLife FSHD: A Patient-driven Health and Research Platform

Recruiting Observational Study
FSH FSH Muscular Dystrophy FSHD - Facioscapulohumeral Muscular Dystrophy FSHD1 FSHD FSHD2 Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy 1 Facioscapulohumeral Muscular Dystrophy 2 Facioscapulohumeral Muscular Dystrophy (FSHD) Muscular Dystrophy, Facioscapulohumeral
No Study Drug Researchers observe your health over time — no experimental treatment is given.
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Review the details below, then apply to join this clinical trial.

At a Glance
Age
1 and older
Sex
Any
Study type
Observational
Participants needed
5,000 (estimated)
Sponsor
FSHD Society · Other
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About This Trial
BetterLife FSHD is a registry platform built to support people living with FSHD. It connects patients with personalized resources, tools, and research opportunities that match their health experiences and needs. At the same time, BetterLife collects secure health and experience data from patients to support research. This data is shared with researchers to help better understand FSHD and work towa…
Trial Locations
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Eligibility Criteria
Inclusion Criteria: * Individuals with a clinical or genetic diagnosis of FSHD, or individuals with a family history of FSHD who are showing symptoms * Age 1 year or older * Residing in the United States or its territories * If age 18 or older, individual must be able and willing to provide consent…
Contacts

Kayleigh Worek, MS

781-301-6060

betterlife@fshdsociety.org

CONTACT