New platform combines patient data with health management tools to drive breakthroughs in FSHD research and treatment.
RANDOLPH, Mass., Oct. 5, 2024 /PRNewswire-PRWeb/ — The FSHD Society has released BetterLife FSHD, a groundbreaking web-based research hub and study designed to advance the understanding of Facioscapulohumeral Muscular Dystrophy (FSHD) and improve patient outcomes. Developed in partnership with Lumiio and officially launched on August 29, 2024, BetterLife FSHD is the first and only digital platform of its kind for the FSHD community, combining a patient registry with health management tools.
“By integrating real-world patient experience data with support tools on a multi-use research platform, we hope to directly and rapidly impact therapeutic development and access,” states Amanda Hill, Senior Director of Research and Care of the FSHD Society.
Facioscapulohumeral Muscular Dystrophy (FSHD) is a hereditary muscle-weakening condition that affects approximately 1 in 8,000 individuals worldwide. This disorder is characterized by relentless, lifelong muscle degeneration, often involving the muscles of the face, shoulders, upper arms, trunk, and legs, and can result in difficulties with facial expressions, lifting objects, walking, and even basic movements. As FSHD progresses, it can lead to significant disability. The variability in symptom onset, progression, and severity makes FSHD a challenging disease to diagnose and treat effectively. This variability also underscores the need for comprehensive data collection and research to develop personalized treatment approaches.
BetterLife FSHD is set to revolutionize FSHD research by gathering comprehensive self-reported data from patients living with this highly variable disease. The platform serves dual purposes: as a patient registry that collects vital health information and patient-reported outcome measures, and as a health management tool that allows individuals to track their symptoms, access personalized resources and better manage their journey. The resulting real-world data will be invaluable for researchers, providing a clearer picture of how FSHD manifests differently among patients and identifying patterns that could lead to more accurate diagnoses and targeted therapies. Additionally, BetterLife data will help inform the decisions of payors and regulators, ultimately improving treatment access and patient care.
“The launch of BetterLife FSHD represents a clear inflection point in the FSHD community’s journey towards a cure. By integrating real-world patient experience data with support tools on a multi-use research platform, we hope to directly and rapidly impact therapeutic development and access,” states Amanda Hill, Senior Director of Research and Care of the FSHD Society.
BetterLife FSHD data will be available to the research community in early 2025 through an online request portal. By leveraging the power of patient engagement, BetterLife FSHD aims to accelerate the pace of research, support patient access, and ultimately improve care. With multiple clinical trials currently underway for potential FSHD treatments, the launch of BetterLife FSHD represents a significant step forward in the global effort to cure FSHD.
For more information about BetterLife FSHD, visit http://www.BetterLifeFSHD.org or contact BetterLife@FSHDSociety.org.
About the FSHD Society:
The FSHD Society is a leading nonprofit organization dedicated to finding treatments and a cure for Facioscapulohumeral Muscular Dystrophy. The Society supports research, advocacy, and education initiatives aimed at improving the lives of those affected by FSHD. For over 30 years, the Society has driven major advancements in research and treatment development, with the mission to end the pain, disability, and suffering of those living with FSHD.
Media Contact
Erin Saxon, FSHD Society, 781-301-6060, erin.saxon@fshdsociety.org, FSHDSociety.org
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SOURCE FSHD Society
