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. 2022 May 20;10(5):e32158. doi: 10.2196/32158

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©Haitham Abaza, Dennis Kadioglu, Simona Martin, Andri Papadopoulou, Bruna dos Santos Vieira, Franz Schaefer, Holger Storf. Originally published in JMIR Medical Informatics (https://medinform.jmir.org), 20.05.2022.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Medical Informatics, is properly cited. The complete bibliographic information, a link to the original publication on https://medinform.jmir.org/, as well as this copyright and license information must be included.

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Technical vision. CDE: common data element; EJP RD: European Joint Programme on Rare Diseases; ERDRI: European Rare Disease Registry Infrastructure; ERN: European Reference Network; EU RD Platform: European Platform on Rare Disease Registration; MDR: Metadata Repository.