Workshops on Orphacodes in health information systems

Two workshops were organised in the scope of the EUCERD Joint Action (N° 2011 22 01), co-funded by the EU Health Programme, in order to inform competent authorities across Europe of the utility and feasibility of implementing Orphacodes in health information systems, bringing together representatives from authorities in charge of coding in health information systems.

Workshop objectives:
The first workshop took place on 18 March 2014 in Paris in order to share experiences and define jointly a strategy and concrete next steps, and the second took place in Ispra in 1-2 October 2014 under the aegis of the EC’s Joint Research Centre, with the scientific support of the EUCERD Joint Action, to define a work plan in this area.

Following the progress made during these workshops the Commission Expert Group on Rare Diseases adopted a Recommendation on Ways to Improve Codification of Rare Diseases in November 2014.

Outcomes: