New RD-ACTION output on standardising data in ERNs

At the end of April, RD-ACTION organised a major workshop, hosted by DG Sante, in Brussels.  68 experts participated: a mixture of ERN Coordinators, EURORDIS and Orphanet partners, data/eHealth specialists, Coding experts, Phenotype ontology experts, data linkage experts, and DG Sante representatives.

The goal of the workshop was to give participants a deeper understanding of the potential for four key resources to increase the utility and re-usability of data collected in the ERN (indeed broader rare disease) sphere. The focal tools/approaches were Orphanet Nomenclature; Human Phenotype Ontology; concept of a PPRL (Privacy-Preserving Record Linkage); and FAIR data.

The workshop provided more practical guidance on the use of these four focal tools/approaches, as a starting point towards optimising the value of data in the ERN community – see the ToolKits on the dedicated workshop page

After a summer review process, the main output –  Recommended Practices for Data Standardisation in the Context of the operation of ERNs (final 2017)  was released.