Clinical Trial

BetterLife FSHD: A Patient-driven Health and Research Platform

Recruiting
View on ClinicalTrials.gov →
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
Protocol Amendment History 1 amendment
This ClinicalTrials.gov record has been amended once since 2026-02-06.
Trial Details
NCT Number NCT07409142
Lead Sponsor FSHD Society
Conditions FSH, FSH Muscular Dystrophy, FSHD - Facioscapulohumeral Muscular Dystrophy, FSHD1, FSHD, FSHD2, Facioscapulohumeral Muscular Dystrophy, Facioscapulohumeral Muscular Dystrophy 1 +3 more
Enrollment 5,000 participants
Start Date 2024-08-02
Primary Completion 2060-01 (estimated)
Study Completion 2060-01 (estimated)
Updated on ClinicalTrials.gov 2026-02-20