Domain-Specific Common Data Elements for Rare Disease Registration: Conceptual Approach of a European Joint Initiative Toward Semantic Interoperability in Rare Disease Research.

Haitham Abaza Dennis Kadioglu Simona Martin Andri Papadopoulou Bruna Dos Santos Vieira Franz Schaefer Holger Storf

Published in: JMIR medical informatics (2022)

The approach described for defining DCDEs appears to be feasible. However, it remains dynamic and should be repeated regularly based on arising research needs.

Keyphrases

electronic health record
big data
machine learning
data analysis