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