Directorate General Health & Consumers
Revision of the International Classification of Diseases (ICD). Ensuring codification and classification of rare diseases
The EU has recommended that Member States should to ensure that rare diseases are adequately coded and traceable in all health information systems, encouraging an adequate recognition of the disease in the national healthcare and reimbursement systems based on the International Classification of Diseases (ICD) while respecting national procedures. (Council Recommendation on an action in the field of rare diseases (2009/C 151/02 ) ).
The international reference for classification of diseases and conditions is the International Classification of Diseases (ICD), coordinated by the World Health Organisation (WHO). The Commission will support work with regard to rare diseases within the process of revision of the existing version 10th of the ICD (International Classification of Diseases) in order to ensure a better codification and classification of rare diseases in the future 11th version of the ICD to be adopted in 2015 by the World Health Assembly.
WHO has established various Topic Advisory Groups to serve as planning and advisory bodies in the update and revision process for specific areas. A Group oversees the overall revision process. Working groups the Topic Advisory Groups (TAG) review the proposals. A TAG for rare diseases was established in April 2007 as rare diseases should now be traceable in mortality and morbidity information systems. The production of basic information to establish a first draft of the classification of rare diseases has been assigned to Orphanet and will contribute to the whole revision process, as rare diseases involve all areas of medicine.
Orphanet has developed a strictly clinical in-house classification to meet the needs of the clinicians serving as basis to build the ICD-11 proposals of revision.
To support the revision process the EUCERD (European Union Committee of Experts on Rare Diseases) has created a Working Group and supported some Workshops to closely collaborate with the WHO and to contribute to the revision of the ICD-10, and elaboration of the ICD-11, considering all existing classifications to improve the traceability of rare diseases in health information systems. The production of the Alpha draft is ongoing. Currently six chapters have already been produced and are available for revision by the community of experts.