New ALS Focus™ Data Dashboard Provides Open Access to ALS Community Data

This interactive tool from the ALS Association provides researchers, clinicians, and advocates with real-world data to drive improvements in research, care, and policy.

ARLINGTON, Va., Oct. 16, 2025 /PRNewswire/ — The ALS Association is excited to announce the launch of its new ALS Focus Data Dashboard, a powerful, interactive tool that puts five years of clinical, demographic, and socioeconomic data at users’ fingertips.

Built from information collected through one of the largest community-driven ALS survey studies in the world, the dashboard draws on self-reported, de-identified responses from more than 4,000 people living with ALS and caregivers from across the U.S.

“Because ALS Focus data comes directly from the ALS community, it belongs to the community,” said Sarah Parvanta, Ph.D., MPH, 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 new dashboard allows users to filter and visualize key data points across categories such as time to diagnosis, distance to a multidisciplinary ALS clinic, veteran status, insurance type, and more. This information can be combined with downloadable data files from nine topic-specific ALS Focus surveys to gain a direct lens into the challenges faced by the ALS community and what is most important to them.

ALS Focus data is publicly available through Mass General’s Neurological Clinical Research Institute NeuroVERSE platform and is free for anyone to access and use.

The dashboard’s launch coincides with ALS Focus’s Fall 2025 Survey, which is open through November 14. U.S. residents age 18 or older who are either living with ALS or caring for someone with ALS (either currently or in the past) are invited to share how the disease impacts their overall health and wellbeing. Responses will be used to help improve ALS care and advocacy and strengthen research that uses ALS Focus data, including the Data Dashboard.

To learn more about ALS Focus or register to participate, visit alsfocus.org.

About the ALS Association 

The ALS Association is the largest ALS organization in the world. The ALS Association funds global research collaborations, assists people with ALS and their families through its nationwide network of care and certified clinical care centers, and advocates for better public policies for people with ALS. The mission of the ALS Association is to make ALS livable and cure it. For more information about the ALS Association, visit our website at www.als.org.

About ALS Focus^™ 
ALS Focus is one of the largest community-driven ALS survey research studies in the world. Through twice yearly ALS Focus surveys, the ALS Association scientifically measures the preferences, needs, and experiences of people living with ALS in the United States and their caregivers to inform strategies that will enhance research, care, and advocacy. All responses to ALS Focus surveys are de-identified and shared free of charge with researchers around the world. For more information about ALS Focus, visit alsfocus.org.

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SOURCE The ALS Association