Data Collection and PII

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Project Overview

As part of the wider GDPR this sub-team is looking to focus on;

  • How to handle DoB/Age across age ranges and study types
  • Examples where blood is taken out, treated and in again. Collecting name, DoB and other PII becomes crucial.
  • What data to consider not to collect or collect differently in any study?
  • Look into Exceptions where changes would be applicable in the data collection process. DoB is required to know when e.g. teenagers becomes 18 and need to resign the ICF. Studies with new borns.

Project Leads

Name Role Organisation E-mail
Shannon Labout Project Lead Data Science Solutions LLC shannon.labout@datasciencesolutionsllc.com

Project Participants

Name Role Organization E-mail
Andreas Schwalm Participant CSL Andreas.Schwalm@cslbehring.com
Arlene Coleman Participant Pfizer arlene.coleman@pfizer.com
Ashwini Weber Participant Amgen ashwinic@amgen.com
Hannah Sharp Participant Gilead Hannah.Sharp@gilead.com
Megan Schmidt Participant UCB Megan.Schmidt@ucb.com
Michelle Brooks Participant Alnylam mbrooks@alnylam.com

Project Updates


Objectives and Timelines

List proposed project deliverables and timelines.

Objective Timeline

Project Activities


15th August Meeting Presentation