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.

To register, click any “Register” button on the home page. Fill in your affiliation and contact information, using the email address associated with your affiliation. Our team will review your account before access is granted to the Research Gateway. We review and approve accounts on a rolling basis and as quickly as possible.

After your account is approved, you will have access to a dashboard where you can filter a cohort of interest and view charts of aggregate demographic and disease characterization data. You can also explore all available data variables and submit a request for aggregate or row-level data and recruitment support.

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.

Each account is tied to an individual, but team members from the same organization are encouraged to register independently. Collaboration on data requests is permitted.

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.

Yes. The Research Gateway dashboard allows registered users to search and view all available variables before submitting a request. You can also access a detailed data dictionary.

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.

Typical review and approval takes 2–3 weeks. Once approved, data are generally delivered within 1–2 additional weeks, depending on complexity.

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.

Data are typically provided in CSV format with accompanying data dictionaries. Other formats may be available upon request.

Yes. Approved data use includes publication and presentation, provided BetterLife FSHD is appropriately acknowledged and any applicable data use agreement is followed.

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.

All data are self-reported by individuals with FSHD (or their parent and/or elected care partner) through the BetterLife FSHD platform. Surveys are designed in collaboration with patients and experts to ensure relevance and clarity.

Yes. The registry uses validated tools such as PROMIS short forms and structured measures wherever possible.

Data are de-identified and stored on a secure, HIPAA-compliant platform. Only select BetterLife FSHD staff have access to personally identifiable information. Direct identifiers are never shared with external researchers. Finally, researchers receiving data must agree to a data use agreement.

BetterLife FSHD is governed under an IRB-approved protocol. Data access and use are reviewed by a multi-stakeholder Steering Committee.

Yes. The BetterLife team is open to collaborations and sub-studies to add new modules or questions. Please contact us to discuss your study and the solutions BetterLife may be able to offer. All proposed sub-studies or collaborations are reviewed by the Steering Committee.

Yes. Registered users can request recruitment support, including targeted outreach to eligible participants, and sharing of your study details in the personalized “Research Opportunity” matcher in BetterLife FSHD. To make a request, log into the Research Gateway and click “Start a Request”. All requests are reviewed by the Steering Committee.

You can use our Contact Us form or email us directly at [email protected].

You can use our Contact Us form or email us directly at [email protected].

You can use our Contact Us form or email us directly at [email protected].