EUCERD Joint Action Workshop Report: Orpha codes in Health Information Systems

A new version of the International Classification of Diseases is being curated with the participation of Orphanet

June 20, 2014

It is necessary to share a common language code when recording, describing and discussing scientific achievements. Initiatives such as the International Classification of Diseases (ICD) or SNOMED use standardized definitions and form a common medical language used within the electronic health record systems. The fact that nowadays rare diseases are not properly covered by them adds another difficulty to the fight against rare diseases.

The former European Union Committee of Experts on Rare Diseases (EUCERD), now European Commission Expert Group on Rare Diseases, has recently pyblished the outcomes of a Joint Action workshop on Orpha codes in Health Information Systems. A new version of ICD is being curated with the participation of Orphanet to establish a rare disease nomenclature in its 11th version. The launch of the ICD11 has been delayed until 2017. For this reason initiatives such as the Orpha code, a nomenclature where each rare disease has a unique identifier, are today specially necessary.

During the EUCERD Joint Action it was suggested that an ICD10 code is only used in studies on a rare disease if this code is specific. For all the other rare diseases, ICD10 should be used with the additional Orpha code attached. Participants also agreed that better tracking of changes in the Orpha nomenclature are needed if Orpha codes are to be used by Member States in their health information systems. ENERCA is already including the Orpha codes to classify all the diseases listed in this website.

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