Answer ALS Project to Better Understand and Treat Disease Moves into New Phase

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by Mary Chapman |

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Touted as the largest amyotrophic lateral sclerosis (ALS) investigative effort to date, the Answer ALS research program has finished an initial technology infrastructure stage and is ready to embark on its goal of finding more effective ALS treatments and, ideally, a cure.

A consortium of nearly two dozen medical research centers, technology companies, and 1,000 ALS patients, the program seeks to build the most comprehensive clinical, genetic, molecular, and biochemical assessment ever done into ALS. Results will be shared via secure links with the global research community.

Led by Johns Hopkins University and the Robert Packard Center for ALS Research, the program aims to answer questions about ALS and find new therapies through use of cloud computing, artificial intelligence (AI), and machine learning. The project entails creating up to 1,000 unique stem cell lines from ALS patients and healthy controls, modeling the disease on a large scale and across its many variations.

Built by Avanade and other tech firms, the expansive cloud-based research infrastructure’s feature is its ability to handle an unprecedented amount of data. As work progresses, the platform will permit Answer ALS to incorporate new data and emerging technologies.

“Today we can interrogate cell function like never before,” Emily Baxi, PhD, executive director of the Robert Packard Center for ALS Research, said in a press release. “Answer ALS researchers are essentially building thousands of patient profiles constructed piece by piece from multiple sources of data.

“Using the power of AI and machine learning to integrate and analyze these profiles, we hope Answer ALS will lay the groundwork for uncovering ALS patient subgroups and identify the most effective treatment strategies for each,” Baxi added.

Key to the infrastructure is a data query engine Avanade developed as part of the company’s Technology for Social Good initiative, aimed at non-profit organizations. The engine enables scientists to submit a complex research question and get a response within hours, rather than days or weeks.

Designed by Jeffrey Rothstein, MD, PhD, founder and director of the Robert Packard Center, Answer ALS grew from a collaboration among the center, institutions, and Team Gleason, an organization founded by former National Football League player Steve Gleason after his ALS diagnosis.

Gleason and Team Gleason hosted a summit in 2013 attended by scientists, patients, caregivers, and other ALS stakeholders. The idea was to devise a novel plan to defeat ALS. A year later, the result was Answer ALS, said to be the world’s largest single ALS research project.

“If we truly want to have an impact on seemingly incurable diseases like ALS, Parkinson’s, Alzheimer’s and dozens of others, large scale, coordinated and collaborative efforts aided by technology are the best way to rapidly move forward,” said Gleason. “We haven’t answered ALS yet, but we are closer than ever before. Our work with technology partners like Avanade is a big reason for that.”

“Avanade’s purpose is to make a genuine human impact,” said Pam Maynard, Avanade’s CEO. “And what better way to do that than to help Answer ALS search for treatments, or even a cure for ALS? Our Avanade team is excited an honored to work with this inspiring group of medical researchers, technology partners and patient participants.”

This project is fully enrolled, with 1,000 ALS patients taking part. Updates on the Answer ALS project can be found here.