ALS Focus™ surveys are developed with input from people living with ALS, caregivers, and industry and academic experts. These surveys ask people living with ALS, current caregivers and past caregivers about their needs, experiences and challenges. 

To be eligible to participate, individuals must be living with ALS or be a current or past caregiver. Participants must also be 18 years old or older, live in the United States, and be able to read and understand English. (All survey instructions and questions are presented in English.) A proxy may respond on behalf of a person with ALS. Participation in any ALS Focus survey is completely voluntary, and individuals can decide to stop participating at any time. 

Since 2022, ALS Focus surveys have been hosted on the Qualtrics platform. Participants register through Qualtrics, first completing a Registration Survey that collects an email address and generates a NeuroSTAmP. All ALS Focus participants must also read and sign an informed consent form. A unique link to a Demographics Survey is then sent to the participant’s email address for completion. When new topical surveys are released, participants are informed via email and given a unique link to complete the survey if they are eligible. Health status questions (e.g., ALSFRS-R and vital capacity) are collected longitudinally, while topical surveys are cross-sectional in nature. 

All ALS Focus data is self-reported. De-identified data is made publicly available for any research purpose. 

The methodology of ALS Focus was reviewed by Western Institutional Review Board, which granted an exemption determination. All ALS Focus research team members who handle participant data have human subjects research certifications.