Sign Up For Mailing List Button

Donate to Genetic Alliance

Disease Search Button

Standards and Tools Webinar Series

Facebook icon
Google+ icon
Twitter icon
LinkedIn icon icon
Digg icon

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


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


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


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


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


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


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


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


Register Here

Date: Wednesday, October 1, 2014
Time: 12:00 - 1:00 pm EDT

Mini-Sentinel is a pilot project sponsored by the U.S. Food and Drug Administration (FDA) to create an active surveillance system - the Sentinel System - to monitor the safety of FDA-regulated medical products. Mini-Sentinel uses pre-existing electronic healthcare data from multiple sources. Collaborating Institutions provide access to data as well as scientific and organizational expertise. Mini-Sentinel is part of the FDA’s Sentinel Initiative, which is exploring a variety of approaches for improving the Agency’s ability to quickly identify and assess safety issues.

The Mini-Sentinel pilot provides FDA the ability to:
· Work through the “nuts and bolts” of designing safety assessments using multiple existing electronic healthcare data systems
· Develop and evaluate scientific methods to increase the precision of active safety surveillance efforts
· Identify and address barriers and challenges to building a practical, accurate, and timely system for active safety surveillance

Most Mini-Sentinel activities focus on assessments, methods, or data. Visit to learn more about each type of activity:
· Assessments - Medical product exposures, health outcomes, and links between them
· Methods - Techniques for identifying, validating, and linking medical product exposures and health outcomes
· Data - Mini-Sentinel Distributed Dataset and tools used to access the data

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


Coming Up:
Human Phenotype Ontology

Standards and Tools Webinar Series


Twitter icon
Facebook icon
LinkedIn icon
Google+ icon
YouTube icon

4301 Connecticut Ave NW, Suite 404, Washington DC 20008-2369 | Tel: 202.966.5557 | Fax: 202.966.8553 | EIN 52-1571905

Except where otherwise noted, content on this site is licensed under a Creative Commons Attribution 3.0 License.