#United States #Arlington #ALS Association #Data Dashboard #ALS Focus

New ALS Focus Data Dashboard: An Empowering Resource for the ALS Community

The ALS Association has recently introduced an innovative tool designed to enhance the understanding of ALS (Amyotrophic Lateral Sclerosis) through the ALS Focus Data Dashboard. This interactive platform brings together five years of valuable clinical, demographic, and socioeconomic data, making it an essential resource for researchers, clinicians, and advocates striving to improve ALS research, care, and policy.

A Community-Driven Initiative

The Data Dashboard is rooted in a large-scale community-driven survey, involving over 4,000 individuals with ALS and their caregivers from across the United States. This extensive input allows the dashboard to present a clear picture of the realities faced by the ALS community, grounded in self-reported, de-identified data. Sarah Parvanta, Ph.D., MPH, who serves as the senior director of mission informatics at the ALS Association, emphasizes that this data is a shared community asset. “Because ALS Focus data comes directly from the ALS community, it belongs to the community,” she states.

Features of the Dashboard

The ALS Focus Data Dashboard is equipped with a user-friendly interface that enables users to filter and visualize critical data points. Key categories include:

• - Time to Diagnosis: Insights into how long it takes for individuals to receive a diagnosis.
• - Distance to Multi-Disciplinary ALS Clinics: Data reflecting geographical challenges faced by patients.
• - Veteran Status: Understanding the unique needs of veterans affected by ALS.
• - Insurance Type: Examining how various insurance coverages impact ALS care.

Through this interactive tool, users can also access downloadable data files from nine topic-specific ALS Focus surveys. This allows for an in-depth understanding of the challenges that the ALS community encounters, along with insights on what matters most to those affected by this life-altering condition.

Open Access to Essential Information

The ALS Focus data is available to the public through Mass General’s Neurological Clinical Research Institute NeuroVERSE platform. This open-access model invites anyone interested in ALS—researchers, healthcare professionals, policymakers, and advocates—to leverage this data in their efforts to make informed and impactful decisions related to ALS care and research.

The launch of the dashboard is timely, coinciding with the ALS Focus Fall 2025 Survey, which is currently open until November 14. This survey invites U.S. residents, age 18 and older, living with ALS or caring for someone with ALS to share their experiences regarding the disease’s impacts on their health and wellbeing. The collected responses will not only enhance ALS care and advocacy but will also contribute to strengthening research initiatives utilizing the ALS Focus data, including the new Data Dashboard.

About the ALS Association

Founded to combat the challenges presented by ALS, the ALS Association has established itself as the world's foremost ALS organization. The Association is pivotal in funding global research collaborations, providing essential support for individuals with ALS and their families through a nationwide network of care and certified clinical centers. Additionally, they advocate for improved policies affecting individuals with ALS, firmly committing to the mission of making life with ALS more livable and ultimately finding a cure. More details can be found on their website at www.als.org.

About ALS Focus

As one of the largest community-driven survey initiatives in ALS research, ALS Focus conducts biannual surveys capturing the preferences, needs, and experiences of ALS patients in the U.S. The data gained from these surveys is anonymized and made freely available to researchers worldwide, supporting global efforts to enhance ALS experience and care. For additional information or to participate in current or future surveys, visit alsfocus.org.

Through tools like the ALS Focus Data Dashboard, the ALS Association is forging a brighter future for those impacted by ALS, empowering individuals and communities with the knowledge and resources necessary for success.