NIH Awards Barrow $25.3M for ALS Study

Barrow Neurological Institute has been awarded an additional $25.3 million from the  National Institutes of Health (NIH) to extend the Access for All in ALS (ALL ALS) Consortium for another two years. This new funding brings the total NIH investment in the consortium to $76.5 million, making it the largest externally funded research program in Barrow’s 64-year history. 

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. 

ALS, often referred to as Lou Gehrig’s disease, is a progressive and ultimately fatal neurodegenerative disease.  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. 

“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 the principal investigator of the ALL ALS West Clinical Coordinating Center. “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.”

Since announcing its first enrolled participant in summer 2024, the consortium has rapidly scaled its operations, reaching 2,000 participants. The program is actively fulfilling data requests through the ALS Knowledge Portal and has shared its first sets of biofluid samples with the broader research community.

The consortium uniquely captures longitudinal data, including clinical outcomes and biological samples from both people living with ALS and healthy control participants (ASSESS Study), and people with increased genetic risk of developing ALS (PREVENT Study). To ensure broad accessibility, ALL ALS offers a remote participation option, allowing eligible individuals in rural and geographically underserved communities to contribute to the fight against the disease. 

While the ALL ALS PREVENT study has concluded its enrollment phase, the ASSESS study is slated to continue through February 2027. Through these efforts, the consortium is building a permanent infrastructure designed to support ALS research far into the future.

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

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