Photos from VASCERN: The ERN on rare multisystemic vascular diseases's post
The Vascular Anomalies Working Group (VASCA WG), chaired by Prof. Miikka Vikkula, is at the de Duve Institute in Brussels today and tomorrow for their face-to-face meeting! So far they have worked on their venous malformation patient pathway and have had a Clinical Patient Management System (CPMS) demonstration by our IT helpdesk & end-user support specialist! Lots of progress being made and still lots of cover! Hevas Vascapa Bundesverband Angeborene Gefäßfehlbildungen e.V. #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/