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Unleashing Big Data to Answer ALS

Recently, the Packard Center hosted leaders from private industry, academic medical research, patients and philanthropists at the Microsoft Policy & Innovation Center in Washington, DC to discuss how they are working together to solve science and medicine's most complex problems.  

21st century tools and technologies are dramatically altering the way that we live, work, play, learn, shop, communicate, and connect. The names for some of these tools include things like: big data, advanced computing, machine learning, artificial intelligence.

There is a paradigm shift underway in how diseases are understood, in how patient-centered care is defined, and in how therapies are developed and clinical trials are conducted. This shift rests on more and better data about patients and their illnesses.

We are witnessing innovative combinations of tools, techniques, and disciplines in tackling hard questions in science and medicine. One example that exemplifies a new approach is called Answer ALS: the largest-ever research study of people with amyotrophic lateral sclerosis (also known as Lou Gehrig’s disease), a disease of the central nervous system that has eluded the medical research community in its efforts to solve the disease and develop therapies. The goal of Answer ALS is to pioneer a new approach to understanding the disease at the cellular and molecular levels in patients, and thereby target the right therapies to precisely the right groups of patients. If successful, this new approach could provide a road map for tackling other major diseases of the brain and central nervous system.

The evening's speakers included:

Antony Rosen, MB, Ch,  Vice Dean for Research at Johns Hopkins Medicine; Co-Director, inHealth.  Dr. Rosen addressed the 21st century paradigm shift in understanding disease and treating patients, by defining subgroups of patients, understanding the mechanisms that drive disease and devising more targeted, homogeneous treatment interventions.  Click here to view Dr. Rosen's slides from the presentation.

Jeffrey Rothstein, MD, PhD, Professor of Neurology, Johns Hopkins University; Director, Robert Packard Center for ALS Research; Executive Director, Answer ALS.  Dr. Rothstein spoke about precision medicine in the neurological disease space, using Answer ALS as a model. 

Ernest Fraenkel, PhD, Professor of Biological Engineering, Massachusetts Institute of Technology; Co-Director, Center for Data-Driven Therapeutics. Dr. Fraenkel addressed the role of advanced computing and ‘omics’ analysis in the Answer ALS study; specifically, he spoke about how the convergence of breakthroughs in experimental and computational technologies may change the future of research, clinical trials, and therapy development in diseases like ALS and frontotemporal dementia. (Video and slides from Dr. Frankel's presentation are unavailable)

Elizabeth Bruce, University Lead, Technology and Civic Engagement, Microsoft; Liaison to the Answer ALS Microsoft partnership. Ms. Bruce addressed industry collaboration, specifically Microsoft’s role in providing a data storage and computing platform for Answer ALS. Click here to view Ms. Bruce's slides from the presentation.

Ed Rapp, Former President of Caterpillar Group; Chairman of the Answer ALS Advisory Board.  Joining us by Skype, Mr. Rapp addressed the significance of meaningful participation in precision medicine research from a patient’s point of view. 

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