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Jan 8

Answer ALS Launches 'The Data is Here' Campaign to Announce the Release of the World's Largest Open-Sourced ALS Data Portal

ALS Headlines, Breaking Research, Packard Center News
Answer ALS Launches 'The Data is Here' Campaign to Announce the Release of the World's Largest Open-Sourced ALS Data Portal

Answer ALS and the Robert Packard Center for ALS Research, in cooperation with the Stephen Hawking Foundation, launches "The Data is Here" campaign on January 8 on what would have been the famed theoretical physicists’ 79th birthday. The campaign features a video tribute to Stephen Hawking and his tireless efforts to solve complex universal questions, while living with ALS for over 50 years. Although science was unable to unravel the mystery of ALS in his lifetime, the campaign boldly states, "At 21, Stephen Hawking was diagnosed with ALS. In '21, we aim to make a breakthrough in his honor. The data is here."

To celebrate Professor Hawking's birthday, Answer ALS is providing open access to the most comprehensive ALS research in history through its recently developed and expanded data portal. With support and guidance from Microsoft, the Answer ALS team has been working with developers at EPAM to build an unprecedented data portal hosted on Azure. The portal will empower researchers with the critical tools necessary to explore the enormous trove of data collected from over 1000 ALS patient participants and controls. Through the use of artificial intelligence (AI) and machine learning, the Answer ALS data will serve as the foundation for new clinical trials, identifying ideal trial participants, and to find drug-responsive biomarkers or diagnostics.

"This biological and clinical data creates a foundation for scientists, companies and labs around the world to tackle the challenge of understanding ALS subgroups, real human-relevant pathways and the tools to find individuals' disease-specific drugs, said Dr. Jeffrey Rothstein, Executive Director of the Answer ALS Research Program and Founder and Director of the Robert Packard Center for ALS Research at Johns Hopkins, the group responsible for leading Answer ALS. "This game-changing data portal will host more data than there are stars in the visible sky," he continued. "We believe this would have resonated with Professor Hawking, and we are excited to release this today in his honor."

The portal and data releases are milestones not only for the Answer ALS program but for the field of ALS and neurodegenerative diseases in general. This is the first time data from nearly all biological assessments or "multi-omics" have been combined with clinical data and made publicly available. The datasets, which include clinical, genomic, transcriptomic, and epigenomic sequence data, were all derived from individual Answer ALS study participants, who made this progress possible.

Answer ALS Advisory Board Chair and study participant Ed Rapp said, "Any great breakthrough is like a game of dominoes. You have to get the first domino to fall and once you do, it leads you down a path to success." Rapp added, "Tipping the first domino was deploying exponential computing capabilities that allow large data storage, genetic sequencing in an hour, and deeper machine learning into the disease. That effort will then facilitate all other dominoes by the discovery of ALS subgroups and ultimately treatments or a cure."

To learn more about Answer ALS, please visit To search the data, please visit Additional data will be added to the portal as it becomes available, including proteomics derived from individual study participants. Currently, data downloads are available at no cost to the research community through an Azure grant from the Microsoft AI for Accessibility program.


About Answer ALS

The Answer ALS Research Program is led and coordinated by the Robert Packard Center for ALS Research at Johns Hopkins. To learn more about the Packard Center, please visit Answer ALS is the single largest and most comprehensive ALS research project in history, producing more ALS data than has ever been amassed, while openly sharing with the global research community. For more information, please visit

The Answer ALS Research consortium consists of clinics and labs at Johns Hopkins University, Cedars-Sinai, Massachusetts General Hospital, University of California Irvine, Emory University, Northwestern University, Ohio State University, Washington University, Texas Neurology, Massachusetts Institute of Technology, Gladstone Institutes, New York Genome Center and more. Participating partners include, but are not limited to, Microsoft, IBM Research, Accenture, EPAM, the Fishman Family, ALS Finding a Cure, Stay Strong Against ALS, Aviators Against ALS, American Airlines, Caterpillar, National Football League, Professional Golfers' Association, ALS Association, Muscular Dystrophy Association, Les Turner ALS Foundation, Lipp Foundation, Travelers Insurance, Hartford Foundation, Bruce Edwards Foundation, Gates Ventures, and Team Gleason.

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