ALS Focus™ collects and maintains a database of evidence on people’s self-reported experiences living with ALS and caregiving for those with ALS in the United States, providing a direct lens into what is important to them. This data is publicly available for those focused on ALS research, advocacy and care to utilize in their work and inform their decision-making.
ALS Focus data is free for anyone to access and use. When a survey closes, the de-identified data is cleaned and shared initially with ALS Focus sponsors for 6 months. After this 6-month period, the data is uploaded to Mass General’s Neurological Clinical Research Institute NeuroVERSE platform, which supports the distribution and sharing of datasets related to neurological research. Agreeing to the ALS Focus data-sharing terms is required for download.
ALS Focus was designed to scientifically and ethically capture the perspectives of the ALS community. The survey program’s methodology was reviewed and granted an exemption by an external institutional review board.
Since 2020, ALS Focus has asked people living with ALS and current and past caregivers about their needs, preferences and experiences. Analysis of these results has provided valuable insight into what is important to people with ALS and caregivers in the United States.
People living with ALS and caregivers drive every aspect of ALS Focus. They provide input and insight – along industry, academic and government experts – as part of the ALS Focus Steering Committee and the Patient and Caregiver Advisory Committee.