Domain-Specific Common Data Elements for Rare Disease Registration: Conceptual Approach of a European Joint Initiative Toward Semantic Interoperability in Rare Disease Research
BackgroundWith hundreds of registries across Europe, rare diseases (RDs) suffer from fragmented knowledge, expertise, and research. A joint initiative of the European Commission Joint Research Center and its European Platform on Rare Disease Registration (EU RD Platform), the...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
JMIR Publications
2022-05-01
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| Series: | JMIR Medical Informatics |
| Online Access: | https://medinform.jmir.org/2022/5/e32158 |