02/12/2019

Data Management & Quality Training

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.