BetterLife Research Gateway offers unprecedented access to real-world data from people living with FSHD

RANDOLPH, Mass., June 23, 2025 /PRNewswire-PRWeb/ -- At the FSHD Society's 32nd annual International Research Congress (IRC), held June 12th and 13th in Amsterdam, Amanda Hill, Senior Director of Research and Care for the Society, announced the launch of the BetterLife FSHD Research Gateway. The Gateway offers researchers streamlined access to a growing body of real-world, patient-reported data, opening new opportunities for accelerating facioscapulohumeral muscular dystrophy (FSHD) research and treatment development.

The BetterLife Research Gateway is a centralized portal for exploring and requesting data contributed directly by people living with FSHD. With more than 500 participants currently enrolled, the dataset includes longitudinal insights on mobility, pain, fatigue, sleep, mental health, and more. Data are collected under an IRB-approved protocol and are processed in full compliance with the Health Insurance Portability and Accountability Act (HIPAA) and the General Data Protection Regulation (GDPR).

"BetterLife was built in partnership with the FSHD community to connect patient voices and experiences with research," said Amanda Hill. "Through the Research Gateway, we are making data easier to access and use, supporting everything from trial recruitment and feasibility to natural history studies and outcomes research. We are proud to offer a resource that is not only rigorous but deeply rooted in lived experience."

The FSHD Society, the leading global nonprofit focused on facioscapulohumeral muscular dystrophy, hosts the annual IRC and created the BetterLife platform to advance both care and research. BetterLife was developed with technical support from Lumiio Inc., a global leader in digital health, and shaped by input from patients, families, clinicians, researchers, and industry partners.

Launched in the U.S. in late summer 2024, BetterLife has already demonstrated strong early engagement. Participants have completed more than 2,700 surveys, with most contributing both baseline and follow-up data. In addition to survey-based contributions, participants use tools like health diaries, personalized resource feeds, and community polling to engage more fully with their data and with others in the FSHD community. The FSHD Society is eager to work with registries across the world to expand BetterLife to a global audience, and the platform is anticipated to be available in Canada later this year.

The Gateway makes this data accessible to qualified researchers through interactive dashboards and searchable datasets. Investigators can explore variables, assess feasibility, request data access, and collaborate with the FSHD Society to conduct studies within the platform.

To learn more and watch the BetterLife Research Gateway launch presentation, visit: https://youtu.be/0XRJ_v6j4CE

To register for the BetterLife Research Gateway, visit: https://research.betterlifefshd.org/

About the International Research Congress
The IRC is the foremost global meeting dedicated to FSHD research. This year's event drew a record attendance of more than 300 researchers, clinicians, and industry leaders, reflecting the growing momentum behind therapeutic development.

About the FSHD Society
The FSHD Society is the world's largest research and patient advocacy organization focused on facioscapulohumeral muscular dystrophy (FSHD). The Society supports families affected by this disease through programs like BetterLife, which provides people with tools to track symptoms and connect with resources, and FSHD Navigator, a service providing personalized assistance to help navigate the challenges of living with 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. "As long as we are here, no patient need ever face this disease alone." For more information about the FSHD Society and its initiatives, please visit http://www.fshdsociety.org.

Media Contact

Erin Saxon, FSHD Society, 781-301-6060 x2000, erin.saxon@fshdsociety.org, www.FSHDSociety.org

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SOURCE FSHD Society