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BetterLife FSHD: A Patient-driven Health and Research Platform
Sponsor: FSHD Society
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
Key Details
Gender
All
Age Range
1 Year - Any
Study Type
OBSERVATIONAL
Enrollment
5000
Start Date
2024-08-02
Completion Date
2060-01
Last Updated
2026-02-20
Healthy Volunteers
No
Conditions
Interventions
Observational
Observational study
Locations (1)
FSHD Society
Randolph, Massachusetts, United States