Unlocking Real-World FSHD Data

The BetterLife FSHD Research Gateway contains contemporary patient-reported data to advance clinical research, inform development programs, and accelerate access to treatment.

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BetterLife Cohort Metrics

BetterLife FSHD is a dynamic and growing U.S. patient registry that captures the lived experience of FSHD in real time. Register to explore deeper cohort insights through interactive, real-time data visualizations.

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633

Total Participants

4,746

Completed Surveys

126,991

Total Data Points

263

Patient Years of Data

What’s in the Dataset?

BetterLife FSHD captures structured, patient-reported data across key domains of disease impact, health history, and quality of life. Data is collected longitudinally to support clinical development, natural history studies, health economic studies, and more.

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Demographics

Age, sex assigned at birth, gender identity, race and ethnicity, and U.S. region. Useful for population stratification, subgroup analyses, and identifying disparities in access or outcomes.

Diagnosis & Genetics

Age at symptom onset and diagnosis, type of diagnosing clinician, family history, and genetic testing results (when known). Supports genotype–phenotype research and natural history modeling.

Mobility & Function

Ambulation status, use of assistive devices, upper and lower limb function, and impact on activities of daily living (ADLs). Enables analysis of disease progression and functional burden.

Fatigue, Sleep, & Pain

Fatigue severity, sleep quality, and pain frequency, location, and intensity. Provides insight into symptomatic burden and quality-of-life impacts.

Mental Health

Symptoms of anxiety and depression and their impact on day-to-day life. Supports research on emotional burden and its relationship to physical function or disease severity.

Physical Activity, Exercise, & Diet

Types of physical activity, exercise routines, and dietary habits. Enables evaluation of lifestyle factors and adaptive behaviors in FSHD.

Healthcare & Social Determinants of Health

Insurance status, recent care utilization, access barriers, education, income, and housing. Supports HEOR, access, and health equity studies.

Clinical Trial Readiness & Preferences

Assesses willingness to participate in studies, preferred trial designs and formats, logistical barriers, and motivations for participation. Useful for recruitment planning and protocol design.

Using the Research Gateway

The BetterLife FSHD Research Gateway is used by academic researchers, biotech and pharmaceutical teams, and patient advocacy partners to access powerful tools for data exploration and collaboration. Once registered, you’ll be able to browse available data fields, request data, and connect with us for additional research support.

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Search & Explore the Dataset

Access a data browser to view what data is available and understand how it’s collected.

Request Data Access

Submit requests for aggregate or row-level data aligned with your research goals.

Design Embedded Studies

Propose custom surveys or studies in collaboration with the BetterLife team.

Plan for Recruitment

Identify eligible participant populations and request support to reach and engage patients.

How BetterLife FSHD Works

BetterLife FSHD is a patient-centered registry built for scientific rigor and operational transparency. Here's how we ensure data quality, privacy, and responsible use.

Ethics & Oversight

The registry protocol is IRB-approved, and all participants provide informed consent. A Steering Committee oversees data access and registry use.

Data Privacy & Security

Our data platform is HIPAA-compliant and has undergone rigorous privacy and security reviews. Direct identifiers are never shared with researchers.

Patient-Centered Design

Surveys are co-designed with people living with FSHD and are structured to be accessible, relevant, and meaningful to both patients and researchers.

Research-Ready Structure

Data are collected using validated tools (e.g., PROMIS short forms), standard measures, and structured responses wherever possible.

Data Access Process

Create a BetterLife FSHD Research Gateway account to explore and request data. Requests are reviewed on a rolling basis and approved requests are shared via secure transfer.

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Frequently Asked Questions

Researchers affiliated with an academic institution, company, or other organization working on FSHD to advance disease understanding, clinical care, therapeutic development, or patient access are eligible to register. This can include decision makers in regulatory agencies or payor systems. FSHD patients enrolled in BetterLife FSHD and their parents or delegates with BetterLife accounts can also register.

Researchers at academic institutions can register an account for free, as can BetterLife FSHD participants. Other users may require payment, depending on your affiliation. If your account requires payment, our team will reach out to you during the account review process.

Current data visualizations include demographics, clinical and genetic diagnoses, medications, comorbidities, mobility, upper body function, and assistive devices. Visualizations can be customized with filters, which narrow your view to specific sub-populations of interest.

Researchers affiliated with an academic institution, company, or other organization can request access to aggregate and row-level data. To make a request, log into the Research Gateway and click “Start a Request”. All requests are reviewed by the Steering Committee.

Data access fees may apply and vary based on factors such as project complexity, funding sources, and organizational type. We aim to keep costs low for academic researchers, especially for investigator-initiated studies. For-profit and industry users should generally expect a fee. Our team will discuss any applicable costs during the data request review process. You’re also welcome to contact us in advance with questions.

Participants complete baseline surveys after enrollment, with follow-up surveys administered annually and as often as quarterly, depending on the survey. Data from the BetterLife FSHD registry is updated once a day to the Research Gateway.

Contact Us

Have questions about the BetterLife Research Gateway? Our team is here to help. We aim to respond to all inquiries within 2 business days.

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