BetterLife FSHD: A Patient-driven Health and Research Platform

ConditionsFSH FSH Muscular Dystrophy FSHD - Facioscapulohumeral Muscular Dystrophy FSHD1 FSHD FSHD2 Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy 1 Facioscapulohumeral Muscular Dystrophy 2 Facioscapulohumeral Muscular Dystrophy (FSHD)Muscular Dystrophy, Facioscapulohumeral

Trial statusRecruiting

Trial phaseNot listed

Trial typeObservational

Biological sexAll

Age1+

SponsorFSHD Society

About this trial

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 criteria

Qualifiers

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

Disqualifiers

Individuals residing outside the United States or its territories

Unable or unwilling to provide consent, or assent, when applicable

Trial design

Treatments tested in this trial

Observational

Treatment groups

No treatment groups listed

Sponsors and collaborators

FSHD Society

Lead sponsor

Source ClinicalTrials.gov