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Autism and Big Data, An Opportunity?

On December 18, 2013, the NLM Foundation sponsored a Boston Club roundtable discussion titled, ‘Big Data & Autism, An Opportunity?’ The discussion was organized around the following themes:

1. Building an Information Commons. What technical developments are needed to combine information from research studies, clinical records, educational individual planning documents, and family-provided observations?

2. Leveraging Social Networks. How can social networks improve the lives of individuals with autism, while providing new kinds of information about the problems they face and the types of solutions that are emerging?

3. Sourcing large, multi-dimensional databases, for better nosology. Autism is defined by a set of behavioral criteria that do not map easily onto neurobiological mechanisms (brain circuits, cellular regulation, physiological circuits, and synaptic dysfunction). Can data science, applied to large genomic and epidemiological data collections, reveal finer, better defined, subclassifications and/or overlaps with mental illnesses?

4. Providing for and Protecting Individuals with Autism in the Age of Big Data. How will the healthcare industry adapt to these changes? And how will the privacy of individuals and their families be protected?

Role of the Healthcare Industry: Costs, Privacy & Innovation
David Fenske, Ph.D.
Dean, College of Information Science and Technology
Drexel University

Andy Ferrara
CEO, Boston Healthcare Associates, Inc.

Role of the Healthcare Industry: Costs, Privacy & Innovation
Thomas Goss, PharmD
Senior Vice President
Boston Healthcare Associates, Inc.

Hakon Hakonarson, MD, Ph.D.
Director, Center for Applied Genomics
Associate Professor of Pediatrics, University of Pennsylvania School of Medicine

Building an Information Commons
Isaac Kohane, MD, Ph.D.
Lawrence J. Henderson Professor of Pediatrics
Children’s Hospital Boston

Rod Miller
Chief Strategy Officer
The iSchool at Drexel University

Julia O’Rourke, Ph.D.
Instructor in Pediatrics
Massachusetts General Hospital

Eric Perakslis, Ph.D.
Executive Director
Center for Biomedical Informatics (CBMI)
Harvard Medical School

Susan L. Santangelo. Sc.D.
Director, Psychiatric Research
Maine Medical Center and
Maine Medical Center Research Institute

Autism Heterogeneity:  The Need for Prospective Big Data Collection
Robert Schultz, Ph.D.
Director, Center for Autism Research (CAR)
Children’s Hospital of Philadelphia

Matthew Siegel, MD
Medical Director
Developmental Disorders Treatment Unit
Spring Harbor Hospital

Sourcing Large Datasets for Better Nosology
Jordan W. Smoller, MD, Sc.D.
Professor of Psychiatry, Harvard Medical School
Professor in the Department of Epidemiology
Harvard School of Public Health
Director, Psychiatric and Neurodevelopmental Genetics Unit
Massachusetts General Hospital
Science Director
Science of Adversity and Resilience Initiative
Center on the Developing Child
Harvard University
Associate Member, Broad Institute

Leveraging Social Networks
Dennis Wall, Ph.D.
Acting Associate Professor, Pediatrics – Systems Medicine
Stanford University School of Medicine


The Nancy Lurie Marks Family Foundation, Wellesley, MA