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
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
Individuals residing outside the United States or its territories
Unable or unwilling to provide consent, or assent, when applicable
People with FSHD living in the United States or its territories age one year or older.
Cohort
Prospective
Observational
Other interventionObservational study
Longitudinal Health Data
Survey questions to capture information on demographics, health history, FSHD diagnosis (clinical diagnosis, genetic testing, family history, etc.), and FSHD symptom management (e.g., use of assistive devices, ventilation, surgery).
Self Reported FSHD Progression
Survey questions that cover muscle weakness, symptom onset, and key progression milestones, and which can be used to estimate FSHD Clinical Score (FCS) . A higher score indicates more disease severity.
Anxiety Patient Reported Outcome Measure
Assesses frequency and impact of anxiety symptoms using a 5-point rating system. Higher scores indicate more anxiety.
Depression Patient Reported Outcome Measure
Assesses frequency and impact of depression symptoms using a 5-point rating system. Higher scores indicate more depression.
Pain Patient Reported Outcome Measure
Assesses the quality of pain and interference with daily life using a 5-point rating system. Higher scores indicate higher levels of pain and interference.
Sleep Patient Reported Outcome Measure
Assesses the quality of sleep using a 5-point rating system. Higher scores indicate poor sleep quality.
Click on the lead sponsor to view all of their trials.
