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IBD Partners: Principles for Patient Collaboration V1

Published by Joanna Ball | Published on December 8, 2017

This resource was created by the IDB Partners Patient Governance Committee and intended to be given to investigators at the beginning of a project to help facilitate an open dialog with the patient collaborator(s). Use this to develop your own principles for effective stakeholder communication. Author(s): IDB Partners Patient Governance Committee Published: November 1, 2017 Read more

EHR Implementation Guide V.1

Published by Joanna Ball | Published on November 30, 2017

The PCORnet EHR-extraction pilot project is underway with three PPRNs (Interactive Autism Network, NephCure Kidney Network, and Phelan McDermid Syndrome Data Network) to acquire electronic health record (EHR) data from network participants for the purposes of research. This implementation guide outlines the steps and resources necessary for an organization to begin acquiring structured EHR data through participant use of a proxy-based application, with the purpose of  describing the technical components, tasks, resources, management approach, and schedule used to complete the PCORnet EHR-extraction pilot project. Author(s): EHR Pilot Team Published November 2017 Read more

PCORnet Commons Tools for Electronic Consent Workgroup Webinar Series: Part 2: Best Practices

Published by Adrianna Evans | Published on November 30, 2017

This presentation, originally recorded on, November 13, 2017, looked at e-consent from several different perspectives. The presentation discussed different technologies used to obtain consent in different contexts. It detail different guidelines as well as use of layered consent. Speakers: Dr. Holly Peay, RTI Dr. Erin Rothwell, University of Utah David Borasky, WIRB-Copernicus Group   [video width="1024" height="768" mp4=""][/video]   Read more

Strategies for Effective Dissemination

Published by Joanna Ball | Published on November 3, 2017

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Best Practice Sharing Session: Design and Development of an Operational Privacy Protecting Record Linkage Tool

Published by Jordan Capizola | Published on November 1, 2017

Dr. Kho discussed how to protect and secure data online. He also explained the ongoing work to develop new security features. Speaker: Dr. Abel Kho, CAPriCORN PCORnet_Best_Practices_4_29_15 Presented on April 29, 2015 Read more

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