The National Institutes of Health (NIH) has awarded Barrow Neurological Institute a grant “to help create and lead a ground-breaking and transformative national amyotrophic lateral sclerosis (ALS) clinical research consortium,” Barrow announced in an Oct. 5 bulletin.
The grant — with a first-year budget of $16.7 million — was awarded “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,” the announcement added.
Barrow’s role will include managing half of the 34 clinical study sites in the United States and Puerto Rico.
Researchers at Barrow, Columbia University, and Massachusetts General Hospital will lead the consortium.
Robert Bowser, Ph.D., ALS researcher and Chief Scientific Officer at Barrow, said, “Barrow Neurological Institute is honored to be selected by the NIH to help coordinate this important research consortium. 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.”
Principal investigators include Jeremy Shefner, M.D., Ph.D., Barrow’s Chief Medical Officer of Clinical Research.
“His team will perform site monitoring activities and training of clinical outcomes for all clinical sites in the consortium,” the announcement said about Shefner. “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.”
Barrow is in Phoenix, Ariz.