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European Commission repository where rare disease registries publish their data element definitions, so others can look them up and reuse them.
- Cost
- Free of charge
- Domains
- Patient registries & rare diseasesClinical research
About
ERDRI.mdr is the Central Metadata Repository of the European Rare Disease Registry Infrastructure (ERDRI), run by the European Commission's Joint Research Centre. It stores the data elements used by participating rare disease registries, with their names and definitions; each registry uploads its data elements as an Excel file, and every upload becomes a new numbered version. Anyone can browse it read-only, with limited detail, without an account; verified registry users can add their registry's data elements, and people setting up or changing a registry can select existing data elements to reuse.
Where it fits in the FAIR Metroline
Metroline steps
Related tools
FAIR Data Point FAIR Data Point Server software that publishes metadata about your catalogues, datasets and distributions as DCAT-based RDF, so people and machines can find it. Cross-domain
ART-DECOR
ART-DECOR
Web platform for building and publishing health-data codebooks (data elements, value sets, terminology bindings); Nictiz hosts a Dutch instance.
Clinical research, Patient registries & rare diseases