BetterLife FSHD is an innovative patient health platform and research registry with a mission to help patients live a better life with FSHD while accelerating FSHD research. Through short survey instruments, participants self-report demographics, health history, diagnosis and progression of FSHD, management strategies, and quality-of-life domains including pain, fatigue, mental health and physical activity. The platform also delivers personalized support tools (health tracking, data visualizations, trial-matching, community polling, curated resources) to enrich the participant experience and strengthen engagement.
Here we detail an initial cohort overview and descriptive analysis of BetterLife data to characterize the participant population over the first 12 months of the registry’s operation. We report descriptive statistical analyses of participant demographics, diagnosis characteristics, symptom onset and progression, functional status, and quality-of-life measures derived from patient-reported outcomes. Healthcare utilization, assistive device use, and engagement metrics (survey completion and follow-up rates) will also be presented.