VASCERN - Patient Groups Develop App Together – myhealthapps blog
Sharing a great article by My health apps about the soon to be released VASCERNApp and how patient Involvement has been so essential in this project! Based on Claudia Crocione's (ePAG Co-Chair for the HHT-WG) presentation of the App at the European Conference on Rare Diseases and Orphan Products (ECRD) this year, read the full blog post here: http://www.myhealthappsblog.com/mhealth/vascern-developing-app/ #eHealth #MobileApp HHT Onlus ... 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/