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.
REGISTRATIONS ARE OPEN FOR
Biomedical Research Training Workshop Week. Implementing Biomedical Research Projects: The Complete Workflow from Concept, ELSI and Privacy Considerations to High-Quality Biobanking (registration is open)