This workshop is the third of the ERN data strategy workshop series. It is dedicated to the various stakeholders expected to interact with the EJP RD Virtual Platform.
In this workshop, the feedback received from the ERN registries on the level of discovery that should be authorised for either anonymous or authenticated users of the Virtual Platform will be discussed first. The practical use of the VP will be presented in a Demo session. Subsequently, a hands-on session will allow participants to test the Virtual Platform and provide their feedback. Researchers as well as stakeholders from industry, the member states and the European Medicines Agency are invited to present their thoughts about the Virtual Platform and discuss the type of collaboration they envision with the ERNs.
Furthermore, patient representatives will discuss the opportunities for rare disease patients created by enabling the discovery of patient data with increasingly automated online solutions. They will present any wishes, concerns, and drawbacks they foresee.
Following these presentations, any further open questions will be addressed in an open discussion and a Q&A session.
Previous session recording available EJPRD- ERICA Joint Workshop “Finding RD registry data in the Virtual Platform”