Actively Recruiting
BetterLife FSHD: A Patient-driven Health and Research Platform
Led by FSHD Society · Updated on 2026-02-20
5000
Participants Needed
1
Research Sites
1847 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
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
CONDITIONS
Official Title
BetterLife FSHD: A Patient-driven Health and Research Platform
Who Can Participate
Eligibility Criteria
You may qualify if you...
- 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 will not qualify if you...
- Individuals residing outside the United States or its territories
- Unable or unwilling to provide consent, or assent, when applicable
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
FSHD Society
Randolph, Massachusetts, United States, 02368
Actively Recruiting
Research Team
K
Kayleigh Worek, MS
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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