RD-CODE project Kick off meeting

To take public health action on rare diseases, it is necessary to know how many people are affected by these diseases (prevalence), how these conditions impact those affected, and to monitor rare diseases’ medical and societal impact. The lack of basic epidemiology for rare diseases across Europe contributes to a lack of recognition and hinders the development of appropriate services and policy. While about 70% of the world’s health expenditures are allocated for reimbursement and resourcing using ICD-10, only 8% of rare diseases have an ICD-10 classification. This means that rare diseases are under-reported, under-recognised and under-resourced in health care systems using ICD-10 and other coding systems. There is a need to implement a specific coding system allowing rare diseases patients to become visible in health statistics.

The RDCODE project Kick-off meeting was held February 4th 2019 in Luxembourg. This project, coordinated by INSERM (Orphanet-US14)  is intended to support the implementation of a codification system specific for rare diseases based on the Orphanet nomenclature of rare diseases in four Member states (Czech Republic, Malta, Romania and Spain) and  it is supported by a grant in the frame of the Third EU Health Programme . Discussions focused on the practical guidance on implementation developed in the frame of the former RD-ACTION , the European Joint Action for rare diseases 2015-2018. This work was recognised as a best practice by the European Commission Steering Group Promotion and Prevention (SPGG). The update of the RD-ACTION ORPHAcodes tool kit as well as the delivery of new Orphanet tools aimed at facilitating the practical implementation of ORPHAcodes are also at the centre of the work to come. The specific activities to be carried out in the five workpackages of the project were also discussed and a roundtable was held in order to make sure that coherence and continuity between the project and the former action is ensured and that all tools, material developed within the new project are not only shared between the four implementing countries but are also of use for any new stakeholder. Furthermore, the roundtable was also the occasion to share experiences with other actors, such as ERNs, EURORDIS, HL7 and inter-regional initiatives like EMRaDi aiming at building consistency in rare diseases codification across settings.

All information on the project and resources developed within the project will be made available online at the end of March: www.rd-code.eu, and regular news will be made available in Orphanews.