ALS Focus Survey Results
Below, you will find information about the results from previous ALS Focus surveys. The data collected from these surveys are free and publicly accessible. Click here to access the data.
Understanding Insurance Needs and Financial Burdens
People with ALS and caregivers reported their experiences and challenges around the costs of ALS.
What Matters Most
People with ALS and caregivers shared their perspectives about their ALS disease burden and which ALS symptoms and functions affected their lives most.
Caregiver Needs
Current and past ALS caregivers reported which support programs they use, shared their top concerns, and evaluated their quality of life.
Telehealth
People with ALS and caregivers reported their experiences with telehealth during the COVID-19 pandemic, and their preferences for using telehealth to access ALS care.
Mobility
People with ALS and caregivers reported which mobility equipment they use, how they covered the costs, and whether the equipment met their mobility needs for ALS.
