RecruitingNot Applicable

BetterLife FSHD: A Patient-driven Health and Research Platform

United States5,000 participantsStarted 2024-08-02

Plain-language 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

Who can participate

Age range1 Year

SexALL

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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

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

What they're measuring

Longitudinal Health Data

Timeframe: Assessed annually from enrollment until study completion (10 years)

Self Reported FSHD Progression

Timeframe: Assessed every 6 months, until study completion (10 years)

Trial details

NCT IDNCT07409142

SponsorFSHD Society

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2060-01

Contact for this trial

Kayleigh Worek, MS

781-301-6060 betterlife@fshdsociety.org

View on ClinicalTrials.gov More FSH trials