A new collaborative publication by members of the Heritable Thoracic Aortic Diseases Working Group (HTAD WG) has just been published that compares the cardiovascular outcome in a large group of Loeys-Dietz syndrome patients to a matched group of individuals with Marfan syndrome! ?? Read all about it here: https://vascern.eu/research-news-new-publication-examines-cardiovascular-outcome-in-loeys-dietz-syndrome-versus-marfan-syndrome/ Marfan Europe Network Association Belge du Syndrome de Marfan - ABSM asbl AssoMarfans Marfan Hilfe - Deutschland e.V. Svenska Marfanföreningen ... 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/