Steering, maintaining and promoting the adoption of Orphacodes across MS



The proposition carried in this WP is based on the CEGRD’s “Recommendation on Ways to Improve Codification for Rare Diseases in Health Information Systems”. In order to enable countries to implement coding of rare diseases in a standardized and interoperable way the work package aims at developing a toolset to assist member states in implementing the Orphacodes in their health system. A steering group of MS will be set up to learn from local experiences already in place and better define the required steps and strategy of such a generalization of codification of RD at EU level. The definition of common guidelines addressing the issues of both quality of codification and coherence of exploitation at the European level is a major ambition of this WP. In a second step the development of a European file holding all necessary Orphacodes to be used for implementation in countries will be developed. It will be tested together with the guidelines against already existing systems and fine-tuned according to the test results. This WP is in close cross-talk with WP4, for it is necessary that Orphanet continues its work of keeping the central resource up to date, multi-lingual and interoperable with other resources in use by MS in their HIS. This WP does not address local implementation of the Orpha coding. It is meant to provide guidance and common standards in order to make sure data will be exploitable and comparable at EU level.

  1. Define the common objectives for coding RD in MS, the common level of granularity to be used and guide the implementation
  2. Define a codification resource aimed at having consistency across MS coding for RD
  3. Tune the codification resource after having tested it in a subset of coding groups through pre-existing tools.