BetterLife FSHD Research Gateway

The BetterLife FSHD Research Gateway offers streamlined access to real-world FSHD data 

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Contemporaneous FSHD data at your fingertips

Use interactive dashboards and searchable datasets to explore variables, assess feasibility, and request data access. Available data includes: 

  • Demographics
  • Diagnosis & Genetics 
  • Mobility & Function 
  • Fatigue, Sleep, & Pain 
  • Mental Health
  • Physical Activity, Exercise, & Diet 
  • Healthcare & Social Determinants of Health 
  • Clinical Trial Readiness & Preferences 
Explore Data

 

Access real-world, patient reported data

Data is imported daily from BetterLife FSHD, a dynamic and growing U.S. patient registry with over 500 participants that captures the lived experience of FSHD. 

Available patient-reported data enables multiple research use cases, including:  

  • Subgroup & Disparity Analysis 
  • Genotype–Phenotype & Natural History Modeling 
  • Functional Burden & Daily Impact 
  • Mental Health & Quality of Life 
  • Lifestyle & Adaptive Behavior 
  • Trial Readiness, Access & Equity 
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Designed to meet your research needs

BetterLife FSHD and the Research Gateway are versatile tools designed to meet your research needs and are ready to support new collaborations, including-  

  • Accelerating recruitment with targeted patient finding  
  • Administering surveys and conducting survey based sub-studies 
  • Recruiting for targeted groups, such as focus groups or patient panels  

Interested in collaborating or seeing how our team can support your research needs? Email us at research@fshdsociety.org 

Questions

Have questions about the BetterLife Research Gateway? Our team is here to help. Please email us at research@fshdsociety.org