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Standards and Tools Webinar Series

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

Standards and Tools Webinar Series

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. Creative organizations and individuals are creating solutions to accelerate the use of our health information in a digital world.

This webinar series will examine the plethora of tools and resources available to make use of health-related data. Throughout the series we will examine standards, common data elements, validated instruments, algorithms, queries and methods for small and large data. Opportunities and challenges will be identified throughout the series.

Goals of the series:

  • Enable participant-powered research networks to engage in translational research
  • Educate researchers about new and renewed tools
  • Network researchers, clinicians, and participants through these diverse introductions to quality tools
  • Advance ideas about health related information and data to improve health
  • Provide feedback to the tool-makers so that we alleviate unmet medical needs

As is our usual practice, Genetic Alliance will archive these webinars as part of our service to the boarder community, and specifically to educate condition-specific advocacy organizations. These webinars become part of our Navigating the Ecosystem of Translational Science Toolbox. If you know about a resource or tool that you would like to learn more about, or you see an important resource missing from our lineup, please email info (at) geneticalliance (dot) org.


PhenomeCentral

April 29, 2014 | Click for Webinar Description and Recording | PowerPoint Presentation

PhenX

May 8, 2014 | Click for Webinar Description and Recording | PowerPoint Presentation

REDCap

May 16, 2014 | Click for Webinar Description and Recording | PowerPoint Presentation

i2b2

May 22, 2014 | Click for Webinar Description and Recording | PowerPoint Presentations: Kohane |  Murphy | Avillach

The PCORI Methodology Report: Setting the Standard(s) for Rigorous, Patient-Centered Research

June 3, 2014 | Click for Webinar Description and Recording | PowerPoint Presentation

PROMIS

June 24, 2014 | Click for Webinar Description and Recording | PowerPoint Presentations: KellerRothrock

Common Data Elements

July 9, 2014 | Click for Webinar Description and Recording | PowerPoint Presentation | CDE Workgroup Survey

SMART: Building the App Store for Health: Co-opting the Point of Care for a Learning Healthcare System

July 22, 2014 | Click for Webinar Description and Recording | PowerPoint Presentation

tranSMART

August 5, 2014 | Click for Webinar Description and Recording | PowerPoint Presentations: Keith Elliston, Paul Avillach

CDISC

September 9, 2014 | Click for Webinar Description and Recording | PowerPoint Presentation

Mini-Sentinel

October 1, 2014 | Click for Webinar Description and Recording | PowerPoint Presentation

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