BetterLife FSHD: A Patient-driven Health and Research Platform
FSHD Society
5,000 participants
Aug 2, 2024
OBSERVATIONAL
Conditions
Summary
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 toward improved care, treatments, and outcomes for the community. Learn more and enroll at: www.BetterLifeFSHD.org
Eligibility
Inclusion Criteria5
- 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
- If under age 18, individual must be able and willing to provide assent, when applicable, and have a parent or legal guardian register and provide consent
Exclusion Criteria2
- Individuals residing outside the United States or its territories
- Unable or unwilling to provide consent, or assent, when applicable
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Interventions
Observational study
Locations(1)
View Full Details on ClinicalTrials.gov
For the most up-to-date information, visit the official listing.
NCT07409142