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Study identifier: NCT07409142 Synced from ClinicalTrials.gov · July 29, 2026
● Recruiting

BetterLife FSHD: A Patient-driven Health and Research Platform

Condition: FSH · FSH Muscular Dystrophy · FSHD - Facioscapulohumeral Muscular Dystrophy  ·  Sponsor: FSHD Society

PhaseN/A
Planned participants5000
Who can joinAll sexes, 1 Year to no upper limit
Healthy volunteersNo

About this 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

This description comes directly from the study's public registry record.

Talk to the study team

Kayleigh Worek, MS  ·  781-301-6060  ·  betterlife@fshdsociety.org

Always discuss trial participation with your own doctor first.

Locations (1)

FSHD SocietyRandolph, Massachusetts, United StatesRecruiting

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Source record: clinicaltrials.gov/study/NCT07409142