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.  


29-30 October 2020. ONLINE. Toward Innovative Research Biobanks for Rare Diseases: Overcoming the Challenges
Registration is now CLOSED (deadline was 28 September 2020)

12 – 14 October 2020. ONLINE. Quality assurance, variant interpretation and data management in the NGS diagnostic era
Registration is now CLOSED (deadline was 15 August 2020)

28 September – 2 October 2020. ONLINE. International Summer School on Rare Disease Registries and FAIRification of Data
Registration is now CLOSED (deadline was 19 July 2020)



11 – 14 May 2020. ONLINE. Biomedical Research Training Workshop Week. Implementing Biomedical Research Projects: The Complete Workflow from Concept, ELSI and Privacy Considerations to High-Quality Biobanking

27 – 29 April 2020. ONLINE. International Course: Training on strategies to foster solutions of undiagnosed rare disease cases


Workshop and Hackaton: Molecular pathways for rare disease (FAIR) data analysis

Biobanks training

Quality assurance, variant interpretation and data management in the NGS diagnostics era training

RD registries and FAIRification training

Training on the European Rare Diseases Registry Infrastructure