Terminology Harmonisation in Data Sharing and Disclosure Deliverables

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Project Overview

Currently there is inconsistency in terminology used in the field of data sharing and disclosure. These inconsistencies exist across industry and regulatory agencies as well as within PHUSE and cause unnecessary confusion. This project aims to collect, align and standardise terminology and their definitions used in to be used in future PHUSE deliverables. Previous PHUSE deliverables as well as key publications in the field will be examined to create a proposal for a baseline list of terms and definitions to be used moving forward.

Project Leads

Name Role Organization E-mail
Lukasz Kniola Co-lead Biogen lukasz.kniola@biogen.com
Sarah Balay Co-lead Privacy Analytics shewitt@privacy-analytics.com

Project Leads & Members

Name Role Organization
Bhavna Nanda Participant kinapse
George Allan Participant J&J
Helle Gawrylewski Participant Industry
Jennie McGuirk Participant Icon
Lora Killian Participant Pfizer
Raina Agarwal Participant Kinapse
Sowmya Gabbula Participant Alnylam Pharmaceuticals

Project Updates

Project proposal approved - contact workinggroups@phuse.eu to join the bi-weekly meetings

Objectives and Timelines

Objective Timeline
List of sources utilized September 2020
List of terms and definitions September 2020
Paper describing approach October 2020

Project Activities

This section can document project activities or serve as a jumping off point to other pages in the project.

Meeting Minutes

Archived Content