Orphacodes Project

Currently, only a small fraction of rare diseases have codes in international nomenclatures, making it a challenge to trace patients with rare diseases in health information systems on a national and international level.The Commission expery group on rare diseases in its “Recommendation on Ways to Improve Codification for Rare Diseases in Health Information Systems’ is calling for support of Orpha codes into member states health care information systems.

The objective of this action is to support Member states in improving gathering information on rare diseases by implementation of Orphacodes (rare diseases specific codification system). The implementation precess should be guided by “Standard procedure and guide for the coding with Orphacodes” and “Specification and implementation manual of the Master file” both developed in a frame of the current RD-ACTION. This action should include following activities:

  • develop additional necessary rules and guidelines for rare diseases codification
  • support piloting of Orpahacodes implementation in at least four Member States (currently not having codification system for rare diseases)
  • further suport cooperation and exchange of experiences between Member States on rare diseases codification

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TOPIC : Orphacodes Project

Topic identifier: PJ-03-2018
Publication date: 25 January 2018

Types of action: HP-PJ Project
Opening date:
25 January 2018
Deadline: 26 April 2018 17:00:00

Time Zone : (Brussels time)