New interactive tool provides free access to real-world ALS data
ALS Association makes 5 years of self-reported survey data accessible
The ALS Association has launched the ALS Focus Data Dashboard, a free interactive tool that gives researchers, clinicians, and the public access to five years of self-reported clinical, demographic, and socioeconomic data from more than 4,000 people with amyotrophic lateral sclerosis (ALS) and their caregivers across the U.S.
The dashboard was developed under the ALS Focus survey program, one of the largest community-driven ALS survey studies in the world, the association stated in a press release.
The tool allows users to explore and visualize data such as time to diagnosis, ALS type, and distance to a multidisciplinary ALS clinic. Information about respondents’ age, gender, race, ethnicity, veteran status, education, household income, and insurance coverage is also included.
Exploring the ALS Focus data
For each chart in the dashboard, data is presented as percentages, based on the number of participants who responded to a particular question. Users can filter the data by specific categories.
The dashboard’s underlying datasets are freely available to download through Mass General’s NeuroVERSE platform, which hosts more extensive information than what’s shown in the online charts.
This tool is meant to help researchers, clinicians, policymakers, and advocates better understand the lived experiences of people with ALS and their caregivers, and to use that knowledge to guide decisions in research, care, and policy.
“Because ALS Focus data comes directly from the ALS community, it belongs to the community,” said Sarah Parvanta, PhD, senior director of mission informatics at the ALS Association. “Our goal is to provide open access to ALS Focus data so anyone working to enhance research, care, or policy has the information they need to make informed, impactful decisions.”
The program was created to capture patient and caregiver insights on daily life with ALS. Since its launch, it has conducted nine surveys covering topics such as genetic testing and counseling, treatment priorities, mobility challenges, caregiver needs, telehealth use, and financial and insurance burdens associated with ALS care.
Data from these surveys is intended to improve ALS care, provide greater support for caregivers, improve clinical trial design, advance therapy development, and influence coverage and reimbursement decisions.
The dashboard’s launch coincides with the ALS Focus fall 2025 survey, which is open through Nov. 14 to adults in the U.S. who are living with ALS or caring for someone with ALS. This latest survey seeks to understand how ALS affects participants’ overall health and well-being.
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