BetterLife FSHD: A Patient-driven Health and Research Platform

Anxiety Patient Reported Outcome Measure

Assesses frequency and impact of anxiety symptoms using a 5-point rating system. Higher scores indicate more anxiety.

Time frame: Quarterly, until study completion (10 years)

Depression Patient Reported Outcome Measure

Assesses frequency and impact of depression symptoms using a 5-point rating system. Higher scores indicate more depression.

Time frame: Quarterly, until study completion (10 years)

Pain Patient Reported Outcome Measure

Assesses the quality of pain and interference with daily life using a 5-point rating system. Higher scores indicate higher levels of pain and interference.

Time frame: Quarterly, until study completion (10 years)

Sleep Patient Reported Outcome Measure

Assesses the quality of sleep using a 5-point rating system. Higher scores indicate poor sleep quality.

Time frame: Quarterly, until study completion (10 years)

Fatigue Patient Reported Outcome Measure

Assesses the presence and severity of fatigue using a 5-point rating system. Higher scores indicate more fatigue.

Time frame: Quarterly, until study completion (10 years)

Upper Body Patient Reported Outcome Measure

Assesses the ability to perform activities of daily living with the upper body using a 5-point rating system. Higher scores indicate less difficulty completing tasks using the upper body.

Time frame: Quarterly, until study completion (10 years)

Mobility Patient Reported Outcome Measure

Assesses the ability to perform activities with the lower body (i.e., standing up, sitting) using a 5-point rating system. Higher scores indicate less difficulty using the lower body.

Time frame: Quarterly, until study completion (10 years)

Physical Activity Patient Reported Outcome Measure

Assesses the amount of time spent engaged in physical activity in minutes. Higher scores indicate greater levels of physical activity.

Time frame: Quarterly, until study completion (10 years)

Falls Patient Reported Outcome Measure

Assesses fear of falling during daily activities using a 4-point scale. Higher scores indicate a greater fear of falling.

Time frame: Quarterly, until study completion (10 years)

Research Preferences

Survey questions where participants rank their willingness to participate in various research procedures, concerns about participating in research trials, and preferences for remote/in-person/hybrid study visits.

Time frame: Yearly until study completion (10 years)

Diagnostic Journey

Survey questions to describe participant experience and barriers getting diagnosed with FSHD.

Time frame: One time at Baseline

Healthcare Experiences

Survey questions to describe healthcare utilization and experiences navigating healthcare settings.

Time frame: Yearly, until study completion (10 years)

Women's Health

Survey questions about history of menstruation and pregnancy.

Time frame: Yearly, until study completion (10 years)

Social Determinants of Health

Survey questions about current employment status/job security, neighborhood, religious practices, discrimination, and food security.

Time frame: Yearly, until study completion (10 years)