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

Answer ALS, in cooperation with the Stephen Hawking Foundation, launches “The Data is Here” campaign on January 8 and on what would have been the famed Theoretical Physicist’s 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 he and science were 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 giving the world free access to the most comprehensive ALS research in history through its recently developed and expanded Data Portal. With support and guidance from Microsoft, 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 AI and machine learning, 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, Director, Robert Packard Center for ALS Research at Johns Hopkins University, and the Director of Answer ALS Research. “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 release are milestones in not only for the program but for the field of ALS and neurodegenerative diseases. This is the first time data from nearly all biological assessments or “multi-omics” has been combined with clinical data and made been publicly available. The datasets, which include clinical, genomic, transcriptomic, metabolomic, and epigenomic sequence data, were all derived from individual Answer ALS study participants, who made this progress possible.

One Answer ALS study participant and the Answer ALS Advisory Board Chair, 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 AnswerALS.org. To search the data, please visit the Answer ALS Data Portal: TheDataIsHere.com. More data will continue to be added to the Data Portal as it’s rapidly available, including proteomics data produced from stem cell-derived motor neurons or “virtual biopsies” of individual study participants. Currently, data downloads are at no cost to the research community through a gracious Azure grant from the Microsoft AI for Accessibility program.

The Answer ALS Research Program and consortium is led and coordinated by the Robert Packard Center for ALS Research at Johns Hopkins. The Answer ALS Research consortium consists of clinics and labs at Cedars-Sinai, Massachusetts General Hospital, Emory, Northwestern, Ohio State, Washington University, Texas Neurology, MIT, Gladstone Institutes, the 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, NFL, PGA, the ALS Association, MDA, Travelers, the Hartford Foundation, Bruce Edwards, the Gates Foundation, and Team Gleason.

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