Answer ALS’s Campaign Opens Door to Increased Data Access: James Berry, MD, MPH

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The director of the Massachusetts General Hospital ALS Care Center discussed the origins of ‘The Data is Here’ campaign and the reason to launch it now.

Answer ALS recently just announced the release of the world’s largest open-sourced amyotrophic lateral sclerosis (ALS) data portal, which collected data from over 1000 ALS patient participants and controls. Launched as “The Data is Here,” the event becomes the first to publicly make data from nearly all biological assessments or “multi-omics” combined with clinical data. The datasets, which include genomic, transcriptomic, metabolomic, and epigenomic sequence data, were all derived from individual Answer ALS study participants.

James Berry, MD, MPH, director, ALS Care Center, Massachusetts General Hospital (MGH), feels as though there is a growing understanding of ALS from the range of clinical trials currently being conducted. The portal will be able to continue to empower researchers while serving as a foundation for new clinical trials and locating ideal trial participants.

Berry, who also serves as the program director of Answer ALS and director of the MGH Neurological Clinical Research Institute (NRCI), sat down with NeurologyLive to discuss how the campaign was formed, what benefits it may bring, and why it adds to the growing momentum within the ALS community.