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Data

The innovative resources and tools found here can help you improve the quantity and quality of data used for your studies. PCORnet believes data networks should follow the principles of efficiency, interoperability, transparency, reproducibility, security, and inclusivity of stakeholders. Access pioneering data tools and models now!

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Research

Find innovations that can be applied across the research life cycle - from generating research questions, identifying patients and capturing data, to disseminating results back to participants and the public. Explore these tools and move your research forward!

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Resources

Check out these resources to tap into the wealth of experience and expertise available through PCORnet – or share your own innovative research resources. Search and share now!

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IBD Partners: Principles for Patient Collaboration V1

Published by Joanna Ball | updated 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 | updated 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 | updated 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="http://pcornetcommons.org/wp-content/uploads/2017/11/2017-11-13-PCORnet-BPSS_Recording.mp4"][/video]   Read more

Strategies for Effective Dissemination

Published by Joanna Ball | updated on November 13, 2017

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