Data Management & Quality Training

The main objectives of the training activities on data management & quality are to decrease rare disease data fragmentation and increase data quality by raising the level of capacities and help data sharing in a FAIR ecosystem. 

 The training activities proposed are focused on: 

  • Orphanet nomenclature and rare disease 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 (ERDRI) 

The trainingare delivered on-site ranging from short 1 or 2-day workshops to 3- or 5- days residential training. All training courses are open to all and offered free of charge to interested participants (selection criteria apply). In addition, 10 to 15% of selected participants will be offered travel and accommodation fellowships enabling a more equitable level of participation among EU-13 countries. Several courses* are held in different countries each year to ensure wide participation across Europe.