Increasing Access for ALL in ALS: the ALL ALS Research Studies

ALL ALS Consortium, all-als.org

We’re excited to share an exciting opportunity for individuals to participate in NIH-funded observational ALS research. The ALL ALS Consortium, which launched open enrollment in 2024, is dedicated to advancing our understanding of ALS through two key studies: ASSESS and PREVENT. The ASSESS ALL ALS study is currently enrolling people living with ALS, as well as “control” participants – often family members, caregivers, and friends. The PREVENT ALL ALS study is enrolling individuals who are genetically at risk of developing ALS.

The main objectives of these studies are to increase access to research among the ALS community by providing remote enrollment options, strengthen community engagement, and redefine how clinical progression is measured to ensure it reflects what matters to those living with ALS. The program has plans to build and maintain two connected central repositories to store the largest collection of ALS-related clinical data and biological samples. These resources will be shared with researchers to accelerate scientific discoveries and the development of more effective ALS treatments.

To learn more, you can visit all-als.org, email the Patient Communications Department at info@all-als.org, or contact an ALL ALS site-specific coordinator by email. You can also explore active ALL ALS clinical sites across the U.S. and complete a Participant-Interest Form on the website listed above.

Have questions or want to get involved? The ALL ALS team would love to hear from you. Together, we can make a difference.