“Ethics and regulatory considerations for ERN Data Access Committee members”


Joint ERICA and EJP RD Workshop “Ethics and regulatory considerations for ERN Data Access Committee members” is now reviewable!

This workshop is the fourth of the ERN data strategy workshop series. It primarily aims to train the members of the ERNs Data Access Committee on the legal and ethical aspects to consider when examining an incoming data access request.

The recording and all the presentations are now available!

View this workshop


  • Clémence Le Cornec (ERKNet/EJPRD/ERICA – Heidelberg Universitätsklinikum)
  • Franz Schaefer (ERKNet/EJPRD/ERICA – Heidelberg Universitätsklinikum)
  • Faisal Ahmed (Endo-ERN – University of Glasgow)
  • Jelena Malinina (EURORDIS)
  • Leonardo Cervera Navas (European Data Protection Supervisor – Bruxelles)
  • Annalisa Landi (Gianni Benzi Foundation – Bari, Italy)
  • Guillaume Byk (European Commission – Bruxelles)
  • Tony Brookes (University of Leicester)

In this workshop, organised jointly by ERICA WP2 and EJP RD WP18, the type of data sharing that the ERNs envision with the different stakeholders will be presented. The role of the data access policy in regulating the access to the data will be explained and the structure of the data access request and of the data access request feedback form will be then presented, together with some practical aspects of the DAC work. Afterward, the ethics and regulatory considerations to consider for any incoming data access request will be presented. A distinction will be made between data access requests for-profit versus not-for-profit projects as well as data access requests for pseudonymised or anonymised data. Subsequently, the importance of keeping an open mind upon the examination of a data request and how an overly careful approach with respect to data sharing can undermine research progress for rare disease patients will be discussed. The use of the Common Conditions of use Elements (CCE) as a tool to build use conditions policy covering the general use conditions for a resource will then be presented. Finally, current DAC members (ERN coordinators, ERN researchers, patient representative) will be invited to present their perspective and their experience of dealing with incoming data access requests.

Workshop summary

Workshop“Ethics and regulatory considerations for ERN Data Access Committee members”
DateJune 30th, 2022
WebsiteVisit workshop website
RegistrationRegistration is closed
Clémence Le Cornec from ERICA
Roseline Favresse from EJP RD
Event Recording
Request accessRequest access to recording