Anonymisation and pseudonymisation of rare disease patients⁠: Legal and technical aspects

  • 15 décembre 2021 - 15:00
  • Online

Topic: Anonymisation and pseudonymisation of rare disease patients: legal and technical aspects

Date and Time: December 15th, 2021 from 15.00 – 16.00 CET.

Organisers/Moderators : Franz Schaefer and Clémence Le Cornec

Speakers: Spencer Gibson (University of Leicester), Guillaume Byk (DG-Santé – European Commission) and Antonio Cutillo (Joint Research Center)

Description: This workshop will be the first of the ERN data strategy workshop series. During this first workshop, we will discuss the techniques and algorithms to anonymise and pseudonymise healthcare data from patients with rare diseases. A special focus will be given to the challenges associated with preserving the privacy of patients with rare diseases. The advantages and drawbacks of pseudonymised and anonymised data both in terms of research outcomes and privacy protection level will be discussed. Finally, in relation with the GDPR regulation, the legal implications of sharing anonymised and pseudonymised data with external stakeholders will be examined. Following these presentations, an open discussion and a Q&A session will be held to address open questions.


Time Title Speaker
15:00 – 15:05 CET Welcome & introduction    Franz Schaefer or Clémence Le Cornec
15:05 – 15:20  CET Technical implementation and algorithms to anonymise or pseudonymise healthcare data from patients with rare diseases. Challenges associated with providing sufficient privacy for sharing safely rare disease patient data. Level of privacy protection offered by pseudonymised and anonymised data. Antonio Cutillo (JRC)
15:20 – 15:35 CET Advantages and drawbacks of anonymised and pseudonymised patient data. Type of research that can be conducted on pseudonymised and anonymised patient data. Legal status of pseudonymised and anonymised rare disease patient data. Spencer Gibson (University of Leicester)
15:35 – 15:45 CET Preserving the patient identity in the context of the GDPR regulation. Presentation of the legal requirements promoted by the European Commission. Guillaume Byk (European Commission)
15:45 – 16:00 CET Open discussion Franz Schaefer

More information and registration here: