ALL ALS Consortium creates a central information hub to accelerate ALS research

The Access for All in ALS (ALL ALS) Consortium announced the launch of its official website, creating a central hub for information about its initiatives and clinical research studies. ALL-ALS.org is designed to inform and engage researchers, clinicians, and current and prospective study participants.

The ALL ALS Consortium formed in fall 2023 with funding from the National Institutes of Health (NIH). The consortium consists of 35 clinical sites in the United States and Puerto Rico, led by researchers at Barrow Neurological Institute in Phoenix, Arizona and Massachusetts General Hospital in Boston, Massachusetts.

The ALL ALS Consortium has designed and initiated two research protocols. ASSESS ALL ALS is for people living with the disease and healthy people who will act as comparators. PREVENT ALL ALS is for people who may be at genetic risk for ALS but do not have any symptoms of the disease. The first study participant was enrolled in July 2024, and since that time, the consortium has recruited over 300 participants across the ASSESS and PREVENT studies. 

We are incredibly excited to hit the exciting milestone of 300 participants enrolled, and we look forward to reaching our next big milestone of 1,000 participants by fall 2025."

Robert Bowser, PhD, the Chief Scientific Officer and John P. and Betty Van Denburgh Chair of Neuromuscular Disease at Barrow

The consortium aims to disrupt the traditional research landscape for Amyotrophic Lateral Sclerosis (ALS) by making its data and samples available to researchers around the world, through both a web-based portal and a central biorepository. These open science practices will help pave the way for transformative discoveries in the field, bringing hope to the ALS community.

The consortium will collect and publish clinical, genomic, and biomarker data and samples through the PREVENT and ASSESS studies. This will help researchers everywhere investigate the causes of ALS onset, progression, prognosis, and response to therapies. 

"The size and scope of ALL ALS, the speed of enrollment, and its geographic reach from across the U.S. make ALL ALS special," said James D. Berry, MD, the Chief of the Division of Motor Neuron Diseases and Director of the Neurological Clinical Research Institute at Mass General Hospital. "And it comes at just the right time. The big data generated by ALL ALS prepares us to leverage new AI models to gain radical new insights into the disease." 

ALS, also known as Lou Gehrig's disease, is a progressive neurological disease that causes the degeneration of motor neurons resulting in progressive weakness. ALS has no cure, yet. It is estimated that more than 30,000 Americans may be living with ALS at any given time. 

"Time is of the essence for people living with ALS and those who may be at genetic risk of developing the disease. We are working to discover new drug targets and approaches to quickly identify more effective treatments," Drs. Berry and Bowser said. "It's our hope the All ALS Consortium will lead us to groundbreaking ALS discoveries, treatments, and even prevention strategies."

If you are interested in learning more about this study, please email [email protected]. The ALL ALS Consortium is funded by the National Institutes of Health: OT2NS136939 and OT2NS136938.