The main objectives of this work package are to decrease rare disease data fragmentation and increase data quality through training activities on data management & quality, which will raise the level of capacities and help data sharing in a FAIR ecosystem and networking within the rare disease community.
The residential training activities proposed within this work package will be held in different countries and will focus on:
– Orphanet nomenclature and Rd ontologies for RD research
– Standards and quality of genetics/genomics data in laboratory and clinical research practice
– Strategies to foster solutions of undiagnosed rare disease cases
– Sample data management in biobanks
– Rare disease registries and FAIRification of data at the source
– Components and interoperability tools of the European Rare Disease Registry Infrastructure
To search training courses click on one of the links below.
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