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BetterLife FSHD: A Patient-driven Health and Research Platform

Who can join

Ages 1 and older · All sexes

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
* 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 Criteria:

* Individuals residing outside the United States or its territories
* Unable or unwilling to provide consent, or assent, when applicable

About the study

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

What is being tested

• Observational (other)

Sponsor: FSHD Society · Participants: 5,000 · Started: Aug 2, 2024

Contact the study team

• Kayleigh Worek, MS · Phone: 781-301-6060

Official record on ClinicalTrials.gov — NCT07409142

Locations in the U.S.

Conditions

• Facioscapulohumeral Muscular Dystrophy

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.