ALS Focus Survey Results

ALS Focus™ surveys collect the preferences, needs, perceptions and experiences of people living with ALS and ALS caregivers in the United States, bringing their lived experiences to the forefront. You can find summaries of these results linked below.

To spur research and changes in policy and care, researchers, program administrators, legislative advocates, policy makers and other members of the global ALS community can access ALS Focus survey data for free.

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Insurance and Payment for ALS Care (2022)

People living with ALS and current caregivers shared their recent experiences with health insurance payment for ALS care, including prior authorizations, claims, denials and appeals.

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Mobility (2021)

People living with ALS and caregivers reported which mobility equipment was used, how they covered the costs and whether the equipment met their mobility needs.
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Telehealth (2021)

People living with ALS and caregivers reported their experiences with telehealth during the COVID-19 pandemic and their preferences for using telehealth to access ALS care.
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Caregiver Needs (2021)

Current and past ALS caregivers reported which support programs they used, shared their top concerns and evaluated their quality of life.
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What Matters Most (2020)

People living with ALS and caregivers shared their perspectives about the burdens of the disease and which ALS symptoms and functions affected their lives most.
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Understanding Insurance Needs and Financial Burdens (2020)

People living with ALS and caregivers reported their experiences and challenges related to the costs of ALS.
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