Published on in Vol 10, No 5 (2022): May

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/32158, first published .
Domain-Specific Common Data Elements for Rare Disease Registration: Conceptual Approach of a European Joint Initiative Toward Semantic Interoperability in Rare Disease Research

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

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   1 , PhD ;   Dennis Kadioglu   1 , MSc ;   Simona Martin   2 , PhD ;   Andri Papadopoulou   2 , PhD ;   Bruna dos Santos Vieira   3, 4 , MSc ;   Franz Schaefer   5 , Dr med, Prof Dr ;   Holger Storf   1 , Prof Dr

1 Institute of Medical Informatics, Goethe University Frankfurt, University Hospital Frankfurt, Frankfurt am Main, Germany

2 European Commission, Joint Research Centre, Ispra, Italy

3 Department of Medical Imaging, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, Netherlands

4 Center for Molecular and Biomolecular Informatics, Radboud Institute for Molecular Life Sciences, Radboud University Medical Center, Nijmegen, Netherlands

5 Division of Pediatric Nephrology, Center for Pediatrics and Adolescent Medicine, Heidelberg, Germany

Corresponding Author:

  • Dennis Kadioglu, MSc
  • Institute of Medical Informatics
  • Goethe University Frankfurt
  • University Hospital Frankfurt
  • Theodor-Stern-Kai 7
  • Frankfurt am Main, 60590
  • Germany
  • Phone: 49 696301 ext 80692
  • Email: dennis.kadioglu@kgu.de