BetterLife FSHD: A Patient-driven Health and Research Platform
Recruiting now
Conditions studied: FSH, 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
In brief
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
Key facts
- Study ID
- NCT07409142
- Run by
- FSHD Society
- People needed
- 5000
- Starts
- 2024-08-02
- Expected to finish
- 2060-01-01
- Last updated by the study team
- 2026-02-20
Who can join
Age: 1 and older. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- 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
You may not qualify if…
- Individuals residing outside the United States or its territories
- Unable or unwilling to provide consent, or assent, when applicable
Where it is running
- FSHD Society — Randolph, Massachusetts, United States (enrolling)
Full record on ClinicalTrials.gov
Trial information comes from ClinicalTrials.gov and is refreshed daily. TrialsForMe does not provide medical care and does not run the studies it lists.