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.
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