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

We’re excited to announce a new observational ALS research program, the ALL ALS
Consortium, which launched open enrollment in 2024. The ALL ALS Consortium includes two
studies: ASSESS and PREVENT. The ASSESS ALL ALS study is currently enrolling people
living with ALS, as well as “control” participants who tend to be their families, 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 through remote enrollment, amplify community engagement, and redefine clinical
progression measures to ensure that they are truly meaningful to people 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 support development of more effective
ALS drugs and therapies.
You can learn more about ALL ALS by visiting the website at all-als.org, emailing the Patient
Communications Department at info@all-als.org, or contacting an ALL ALS site-specific
coordinator by email. You can view the active ALL ALS clinical sites, located throughout the US,
and their contact information, as well as complete a Participant-Interest Form on the website
listed above. Please don’t hesitate to reach out to them with questions or interest! Together, we
can make a difference!

Want to see what research access in action looks like? 🎥 Check out this short video from our recent ALL ALS + ALS Arizona pop-up research event! You’ll hear directly from participants, learn how the ALL ALS study is changing the game for research accessibility, and see how our community is coming together to drive progress. Watch the video here: https://youtu.be/ePU9_UL1Wxs?si=cbwc0_VGxwFwHErY