Since 2020, ALS Focus has asked people with ALS and current and past caregivers about their needs and burdens. The goal is to learn as much as possible about their individual experiences throughout the disease journey so the entire ALS community can benefit.

Result summaries from each ALS Focus survey are linked below. The full data collected from these surveys are free and publicly available.

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Insurance and Payment for ALS Care (2022)

People 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 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 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 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 with ALS and caregivers reported their experiences and challenges around the costs of ALS.
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