Officials at the Access for All in ALS (ALL ALS) Consortium say they have launched 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 NIH, consists of 35 clinical sites in the United States and Puerto Rico, and is led by researchers at the Barrow Neurological Institute in Phoenix and Massachusetts General Hospital in Boston.
lou gehrig
A 2000 U.S. postage stamp with an illustration by artist Joe Saffold of Lou Gehrig (1903-1941), known as the “Iron Horse” for his consecutive game-playing streak of 2,130 baseball games. His athletic career and life were cut short by amyotrophic lateral sclerosis, which became known as Lou Gehrig’s Disease. The stamp was created using a muted color palette to resemble vintage baseball cards. [PictureLake/Getty Images]
The consortium has designed and initiated two research protocols, according to Robert Bowser, PhD, CSO and the Betty Van Denburgh Chair of Neuromuscular Disease at Barrow.
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,” said Bowser.
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, added Bowser.
Clinical, genomics, and biomarker data
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, believes 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.
“The size and scope of ALL ALS, the speed of enrollment, and its geographic reach from across the United States make ALL ALS special,” noted Berry. “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,” pointed out Berry and Bowser. “It’s our hope the All ALS Consortium will lead us to groundbreaking ALS discoveries, treatments, and even prevention strategies.”
Those interested in learning more about this study should email [email protected].