Barrow Receives Additional $25.3M From NIH for ALL ALS Consortium
Barrow Neurological Institute has received an additional $25.3 million from the National Institutes of Health (NIH) to extend the groundbreaking Access for All in ALS (ALL ALS) Consortium for another two years.
With this additional funding, Barrow has received a total of $76.5 million from the NIH for ALL ALS. This makes the Consortium the largest externally funded study and program in the Institute’s 64-year history.
About ALL ALS
Established in 2023, the ALL ALS Consortium is transforming the amyotrophic lateral sclerosis (ALS) clinical research landscape through its commitment to open science. By making high-quality clinical data and biological samples accessible to researchers across the United States, the Consortium aims to break down traditional silos in drug development. Barrow serves as the Consortium’s West Clinical Coordinating Center, overseeing 19 of the 37 participating clinical research sites nationwide. The East Clinical Coordinating Center, directed by James Berry, MD, oversees the other 18 of the 37 clinical sites nationwide.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive neurological disease that affects the ability to move, speak, eat, and breathe. The average survival time after diagnosis is about three years. While medications can modestly slow disease progression and other therapies can help improve patients’ quality of life, there are no treatments to halt or reverse ALS progression. This underscores the pressing need for the development of new treatments.
“We built ALL ALS around the idea that accelerating research and drug development in ALS requires broad participation, collaboration, and easy access to high-quality clinical data and biological samples,” said Robert Bowser, PhD, the Chief Scientific Officer at Barrow and a principal investigator of ALL ALS. “The additional funding support from the NIH allows us to continue building an unprecedented resource, which scientists across the country and around the world can use to better understand this disease and identify new drug targets for developing more effective treatments.”
Advancement in Action
Since announcing its first enrolled participant in summer 2024, ALL ALS has reached 2,000 participants. The Consortium is actively fulfilling requests for research data through the ALS Knowledge Portal and has shared its first biofluid samples with the research community.
“We built ALL ALS around the idea that accelerating research and drug development in ALS requires broad participation, collaboration, and easy access to high-quality clinical data and biological samples. The additional funding support from the NIH allows us to continue building an unprecedented resource, which scientists across the country and around the world can use to better understand this disease and identify new drug targets for developing more effective treatments.”
-Robert Bowser, PhD
The ALL ALS Consortium includes two studies designed to better understand ALS. The ASSESS Study includes people living with ALS and healthy control participants. The study collects clinical information, biological samples, and other research data over the course of two years. Eligible individuals may participate at one of the study sites or remotely, regardless of where they live in the United States, expanding access to people in rural and geographically underserved communities.
The PREVENT Study focuses on people who may carry a gene associated with ALS. The study helps researchers learn more about the earliest changes associated with ALS, generating knowledge that may lead to more informative, targeted, and personalized drug development. This work brings the field one step closer to strategies that may help halt, repair, and/or prevent ALS.
While the ALL ALS PREVENT study has closed to enrollment, the ASSESS study is expected to continue through February 2027.
Through continued enrollment, biospecimen collection, data sharing, and collaboration across its national network, ALL ALS is creating an infrastructure designed to support ALS research well beyond the duration of the individual studies and help accelerate discoveries for people affected by this disease.
How to Get Involved
If you are interested in learning more about this study, please email [email protected], visit the website at ALL-ALS.org, or follow @all_als_ on Instagram. The ALL ALS Consortium is funded by the National Institutes of Health: OT2NS136939 and OT2NS136938.