4th Conference on European Reference Networks
The official summary report from the European Commission on the 4th Conference on European Reference Networks is now available! Hot topics discussed at the event included integration of ERNs into national health systems, the Clinical Patient Management System (CPMS), long-term sustainability of the ERNs, Patient-Healthcare professional partnerships, and improving geographics coverage of the networks, to name a few. Read about it here: https://vascern.eu/4th-conference-on-european-reference-networks/ A more detailed report is in preparation by the EC and will be available soon! ?? #ERNeu #ShareCareCure ... See more
EJP RD is co-organising a meeting, along with the European Rare Disease Research Coordination and Support Action consortium (ERICA) and the Joint Research Centre (JRC), on Domain specific Common Data Elements (DCDEs) Curation targeted towards clinicians and people with a medical background to join.The online meeting will take place on December 9th, 2021 from 16.00 – 17.00 CET.In this meeting, the organisers will begin to curate the list of Domain specific Common Data Elements (DCDEs) compiled by the EJP RD FAIRification stewards from the data dictionaries provided by the ERN registries. The aim of the DCDEs is to be able to share domain specific data between ERNs, data that is not currently covered by the Common Data Elements (CDEs).More information and registration here: https://erica-rd.eu/event/domain-specific-common-data-elements-dcdes-curation/