BetterLife FSHD is a new patient health platform and research registry with a mission of helping patients live a better life with FSHD and accelerating FSHD research and therapeutic development. To do this, BetterLife participants are prompted to respond to a series of short surveys. These surveys cover topics including demographics, health history, FSHD diagnosis and progression, FSHD management strategies, and quality of life domains like pain, fatigue, and mental health. From here, BetterLife FSHD takes an innovative approach to the traditional patient registry, utilizing this research data to provide participants with personalized support tools. These tools include health tracking and data visualizations, matching to clinical trials and research opportunities, community polling, and a customized feed of resources from the FSHD Society.
The information that BetterLife FSHD collects is stored and managed in stored in a modern and secure real-world data infrastructure optimized to facilitate broad research and analytic uses. Data is made available upon request to researchers, clinicians, biopharmaceutical companies, regulator and payor bodies, and other organizations involved in FSHD research and therapeutic development with approval from a steering committee.
Launched in late 2024, BetterLife FSHD has already attracted hundreds of participants with FSHD with high rates of engagement, data entry, and overall satisfaction. Here, we detail the process the FSHD Society undertook to develop BetterLife FSHD, share initial learnings from the launch, and report the first cohort description of BetterLife participants.