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ABOUT Patient Powered Research Network: ABOUT Network Researcher Collaboration Request Form

This is the form used by the ABOUT Network and FORCE for researchers to request our patient engagement efforts and services.

LikeSue Friedman   Updated: January 2, 2019

Best Practice Sharing Session: Engagement in PCORnet 1.0: Results of the Engagement Assessment Project

PCORnet has prioritized engagement as a key function in transforming healthcare research. However, there was little investment in capturing and scientifically assessing engagement activities in PCORnet. The Genetic Alliance Coordinating Center set out to capture, review and publish the resources, best practices, and lessons learned from PCORnet and its networks.

LikeMadelyn McKeague   Updated: December 3, 2018

ABX Study: Manuscript Development Process SOP

The purpose of this Standard Operation Procedure (SOP) is to establish a uniform process for PCORnet studies to follow when developing manuscripts and defining and contracting participating authors.

LikeMadelyn McKeague   Updated: November 21, 2018

PaTH: Retaining Local Perspectives in the Era of the Central IRB – The PaTH Network Protocol Review Committee Poster

As currently implemented, the single IRB process means valuable input from both institutional as well as patient and community resources of ceding sites is lost. The PaTH Network aims to develop and implement a process to ensure local patient input in research protocols reviewed under the single, or central, IRB model.

LikeMadelyn McKeague   Updated: November 7, 2018

PaTH: A Multi-Site Review Process that Retains Local Patient Involvement in the Era of the Central IRB Abstract

The PaTH CDRN has developed a pre-IRB review process that incorporates input from all involved sites and their patient partners, enabling all stakeholders to help craft final research plans. Patient partners included in such a pre-IRB review often identify issues that are distinct from those raised by IRB members or by patients who work with specific research teams.

LikeMadelyn McKeague   Updated: November 7, 2018

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