EURORDIS - European Rare Diseases Organisation
A new paper by EURORDIS - European Rare Diseases Organisation outlines proposals on how to "co-create a comprehensive ERN data strategy that matches the ambition of the Networks, enabling them to address some of the most pressing public health needs of people living with a rare disease or complex condition". A must read for ERN Board of Member States, e-Health Networks, the European Commission and the European Reference Networks' Coordinators! Read it below! ⬇? #ERNeu ... 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/