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Project Scope

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 future deliverables. Previous PHUSE deliverables as well as key publications in the field, will be examined to create proposal for baseline list of terms and definitions to be used moving forward.

Project Leads

Email

Lukasz Kniola

lukasz.kniola@biogen.com

Sarah Balay

shewitt@privacy-analytics.com

Lauren White (PHUSE Project Coordinator)

lauren@phuse.global

Objectives and DeliverablesTimelines
Publish first set of terms, definitions and guidance (White Paper)Q2 2021
Publish remaining terms and definitions Q2 2021


CURRENT STATUS Q3/4 2021

  • Published V2 of terms/definitions and guidance document.

  • Project Concluded 

Project Members 

Organisation 
Bhavna NandaKinapse
Devaki ThavarajahIndustry

George Allan

Janssen Research & Development

Helle Gawrylewski

Industry

Jennie McGuirk

ICON

Lora Killian

Pfizer
Mekhala AcharyaTakeda

Raina Agarwal

Kinapse
Sanjay BaganiXogene
Shannon LefaivreRoche

Sowmya Gabbula

Alnylam Pharmaceuticals
 
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