standards > model/format > DOI:10.25504/FAIRsharing.xVAQX9
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ready ERN common data elements

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Semantic data model of the set of common data elements for rare disease registration. To make rare disease registry data Interoperable (the 'I' in FAIR). Version 2.0. License CC0. Here, we present a semantic data model of the set of common data elements for rare diseases registration recommended by the European commission joint research centre. There are 16 data elements: ‘Pseudonym’, ‘Date of Birth’, ‘Sex’, ‘Patient’s status’, ‘Date of death’, ‘First contact with specialised centre’, ‘Age at onset’, Age at diagnosis’, ‘Diagnosis of the rare disease’, ‘Genetic diagnosis’, ‘Undiagnosed case’, ‘Agreement to be contacted for research purposes’, ‘Consent to the reuse of data’, ’Biological sample’, ‘Link to a biobank’, ‘Classification of functioning/disability’. The semantic data model is presented in 11 modules describing the different 16 data elements. Central to each module is the 'person'. Each module has in addition different characteristics assigned to the person.


Countries that developed this resource Netherlands

Created in 2019

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How to cite this record ERN common data elements; ERN common data elements; DOI:; Last edited: March 5, 2021, 8:53 a.m.; Last accessed: Nov 27 2021 12:16 a.m.

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Record added: June 7, 2019, 9:07 a.m.
Record updated: March 4, 2021, 10:46 a.m. by mariudottir.

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