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Upcoming Webinars

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Genetic Alliance Webinars offer information and discussion on a variety of topics, including hot-button issues in genetics and advocacy, public policy, and organizational development. Genetic Alliance presents a new webinar at least once a month.

Managing the Mass of Measures: Real People’s Real Data Made Useful 

The structure and language of health information often reflects the reason it was captured – whether medical records, patient built questionnaires, research registries, wearable devices, clinical trials. When, as a society and a globe, we try to use this information to advance a health agenda, we discover many barriers. These include a lack of: interoperability, standardization, liquidity, quality, clarity of intended purpose, and many other challenges. This webinar series will examine the plethora of tools and resources available to make use of health-related data. Tools and resources we will explore this year are BD2K, Common Data Elements, CDISC, DECIPHER, Human Phenotype Ontology, i2B2, Mini-Sentinel, PhenomeCentral, PhenX, PROMIS, REDCap, and tranSmart.

Register and learn more about these webinars Here


Date: Tuesday, April 29, 2014
Time: 3:00-4:00 pm EDT
Mike Brudno, Centre for Computational Medicine, Hospital for Sick Children


Date: Thursday, May 8, 2014
Time: 12:00-1:00 pm EDT
Carol Hamilton, RTI International – PhenX Overview/History
Cathy McCarty, Essentia Institute of Rural Health or Robert Builder, University of California, Los Angeles (TBD) – PhenX RISING
Wayne Huggins, RTI International – PhenX Toolkit Demo


Date: Friday, May 16, 2014
Time: 12:00-1:00 pm EDT
Paul Harris, Director, Office of Research Informatics – Vanderbilt University


Date: Thursday, May 22, 2014
Time: 12:00-1:00 pm EDT
Paul Avillach, MD, PhD
Research Associate, Center for Biomedical Informatics, Harvard Medical School
Assistant Professor, Paris Descartes University, Paris, France
Scientific Researcher, Medical Informatics, Erasmus University, The Netherlands

Isaac ("Zak") Kohane, MD, PhD
Professor, Harvard Medical School Center for Biomedical Informatics


Date: Tuesday, June 17, 2014
Time: 12:00-1:00 pm EDT
Rich Platt, MD, MSc
Principle Investigator, Mini-Sentinel
Principle Investigator, PCORnet Coordinating Center
Professor and Chair of the Department of Population Medicine, Harvard Pilgrim Health Care Institute


Date: Tuesday, June 24, 2014
Time: 12:00-1:00 pm EDT
San Keller, PhD, American Institutes for Research
Nan Rothrock, PhD, Northwestern University

Coming Up:
Common Data Elements
Human Phenotype Ontology

Register and learn more about these webinars Here

We add new webinars throughout the year. Please stay tuned for outstanding new offerings. In the meantime, check out our archives for webinars you may have missed.


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