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
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Facioscapulohumeral muscular dystrophy (FSHD) is a genetic condition that causes ongoing weakening of skeletal muscles. This research investigates a patient-driven health platform and registry called BetterLife FSHD, designed to support people living with FSHD by connecting them to personalized resources, tools, and relevant research opportunities. The platform also collects secure health and experience data to better understand the disease and improve care and treatments. Participants in BetterLife FSHD complete a series of short surveys at quarterly and yearly intervals. These surveys cover topics like demographics, health history, diagnosis and progression of FSHD, management strategies, and quality of life factors such as pain, fatigue, and mental health. Based on their responses, participants receive personalized resources and are informed about clinical trials and research studies they may qualify for. The collected data is securely stored and shared in a de-identified form with approved researchers and organizations. Throughout the study, participants provide health information regularly through surveys over a period of up to 10 years. The research team assesses longitudinal health data annually and tracks self-reported FSHD progression every six months. Additional patient-reported outcomes related to anxiety, depression, pain, sleep, fatigue, mobility, physical activity, falls, and other health aspects are collected quarterly or yearly. This ongoing data collection supports a comprehensive understanding of living with FSHD and advances research efforts.
CONDITIONS
Brief 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
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person or remote)
Duration - Up to 10 years
Participants complete surveys on demographics, health history, FSHD diagnosis and progression, management strategies, and quality of life to support research and receive personalized resources.
Quarterly and yearly surveys
Trial Site Locations
Total: 1 location
1
FSHD Society
Randolph, Massachusetts, United States, 02368
Actively Recruiting
Research Team
K
Kayleigh Worek, MS
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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