Orphanet is entrusted with the revision of the international classification of rare diseases
The World Health Organization (WHO) is launching an online project to revise the international classification of diseases (ICD), defining world standards applicable to medical and sanitary statistics. For the first time, rare diseases will be taken into account in this revision. The first meeting of the steering group in charge of coordinating the revision was held in Japan on 16-18 April this year. This revision will take place in 3 stages:
Thanks to a new internet application called "ICD-10 Plus", stakeholders will be able to introduce their proposals for ICD improvements and thereby make their own contribution to the revision process. In addition, users will also be able to consult other users’ proposals and discuss subjects on a blog. The proposals will be examined by groups of experts and will facilitate the elaboration of the ICD-11 project.
The WHO has created various consultative topic groups expected to play a role in the planning and coordinating activities involved in the revision process. They incorporate the international teams in charge of the revision work and are presided by:
Other groups are currently being set up. A steering group for the revision will control the coordination and Prof. Christopher Chute from the Mayo Clinic College of Medicine in the USA will preside over all tasks of general interest.
Former ICD revisions are founded on annual conferences attended by a limited number of selected experts. Thanks to this new platform, the WHO will collaborate with interested parties, governmental organisations and NGOs, universities, industry and the general public, to ensure that the new classification system corresponds as closely as possible to their needs. Three distinct versions of the new ICD are envisaged: a concise version for primary healthcare, a detailed version for use in a specialised framework and a specialised version for research purposes.
The "Coding and Classification" Working Group of the Rare Disease Task Force held a meeting in Paris on 2 May in order to discuss the way to start the ICD10 revision process. The members of this WG are the core representation of the WHO Topic Advisory Group for rare diseases, which needs to be completed with experts from other regions of the world. The NIH was represented by Stephen Groft, who expressed the NIH's willingness to participate in the revision process. The minutes of this meeting will be available shortly.
Consult the WHO press release