The ALL ALS Consortium’s Open Science Initiative
By Bio-IT World Staff
May 27, 2025 | The Access for All in ALS (ALL ALS) Consortium is spearheading an ambitious open science initiative that aims to transform how we understand and treat this devastating neurological disease.
Led by Robert Bowser, Ph.D. of the Barrow Neurological Institute and James Berry, M.D. of Massachusetts General Hospital, the consortium is conducting two studies: ASSESS for people living with ALS and healthy controls and PREVENT for those with genetic risk factors but no symptoms.
What makes this initiative revolutionary is its scale and approach. The consortium plans to enroll 2,000 participants by spring 2026—an unprecedented number for ALS research. As of April 2025, they've already enrolled 429 participants across 35 clinical sites nationwide, with 60 participating remotely through a telehealth option.
"It is a heavy load; no one has ever done this before in ALS," says Bowser, highlighting the significance of their work.
The initiative’s open science model means all collected data and patient samples will be available to researchers worldwide through a web portal and NIH biorepository. This collaborative approach could accelerate discoveries about why ALS progression varies so dramatically between patients and potentially lead to more targeted treatments.
Recent advances have already shown promise, particularly with Biogen's Qalsody—the first FDA-approved treatment for patients with SOD1 gene mutations, which has shown remarkable results in slowing disease progression and sometimes even improving strength.
For the millions affected by ALS globally, this consortium represents hope. By gathering longitudinal data, blood samples, cerebrospinal fluid, and even speech recordings from a diverse patient population, researchers may finally unlock the mysteries of this complex disease.
“We’re getting closer and closer to improved treatments for our patients,” Bowser affirms, offering hope to those living with this currently incurable condition.
To read the full story written by Deborah Borfitz, head to Clinical Research News.