Barrow Neurological Institute receives $16.7 million NIH award to help coordinate new national ALS research consortium

The purpose of the award is to create the Access for All in ALS (ALL ALS) Consortium to conduct clinical research that will include ALS patients nationwide, generating a longitudinal biorepository linked to detailed clinical information that will be made available to research scientists throughout the world using a web-based portal. As part of this new consortium Barrow will manage half of 34 clinical sites in the study which spans the U.S. and Puerto Rico. The consortium will be led by researchers at Barrow, Massachusetts General Hospital and Columbia University.

“Barrow Neurological Institute is honored to be selected by the NIH to help coordinate this important research consortium,” said Dr. Robert Bowser, Ph.D., renowned ALS researcher and Chief Scientific Officer at Barrow, which is part of Dignity Health St. Joseph’s Hospital and Medical Center. “By studying patient-derived biosamples from diverse ALS cohorts, we hope to accelerate the development of effective new drugs to extend life for people living with ALS.”

ALS, also known as Lou Gehrig’s Disease, is a rapidly progressive, ultimately fatal, neurodegenerative disease with about 32,000 cases in the U.S. With an estimated lifetime risk of 1 in 400 people, an average of 5,000 new U.S. cases are diagnosed each year. There are no treatments to stop or reverse ALS progression.

The new consortium will include 34 clinical sites in the U.S. and Puerto Rico. Half of the sites will be managed by Barrow researchers as the West coordinating center and half by researchers at Massachusetts General Hospital as the East coordinating center.

Dr. Jeremy Shefner, Chief Medical Officer of Clinical Research at Barrow, is one of the principal investigators in collaboration with scientists from Columbia University and Massachusetts General Hospital.   His team will perform site monitoring activities and training of clinical outcomes for all clinical sites in the consortium. The consortium will provide large-scale, centralized and readily accessible infrastructure for collection and storage of a wide range of data from people living with ALS; individuals at risk for developing ALS; and healthy controls. To foster wide representation across populations, data will be collected from both remote and in person visits, and many clinical sites will be in geographical areas with under-represented minorities. Data will be collected and harmonized in a central data portal, smoothing the path for future research and collaboration across academic institutions and industry.

The Gregory W. Fulton ALS and Neuromuscular Disease Center at Barrow is one of the world’s leading centers for ALS research and patient care. The Institute’s ALS Center has been on the forefront of developing and testing potential treatments quickly and early in hopes of combatting the fatal disease. In 2017, the center was an early adopter of AI technology in partnership with IBM Watson Health to validate the identification of five new genes responsible with ALS.

“Time is of the essence for patients with ALS and we are working to identify new and effective approaches to develop and test new treatments quickly,” says Dr. Bowser. “It’s my hope the Access for All in ALS Consortium will lead us to potentially groundbreaking ALS discoveries and treatments that will extend the quality of life for those living with ALS.”

This research is supported by the National Institutes of Health (OT2NS136939).

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