In this meeting we 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). Hence we would very much like to have your opinion in the curation of these data items to make sure it is maximally useful for you.
Please feel free to forward this invitation to anyone in your ERN or organisation who might be interested to join. We are particularly looking for clinicians and people with a medical background to join. We kindly remind you that the modelling work that will be undertaken by the EJP RD modelling experts will depend on the outcomes of this DCDEs curation, meaning that it is crucial to obtain an adequate picture of your needs. This will be the first of a short series of meeting to finalize the DCDEs.
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