Implementation of rare disease patient coding across member states

In order to analyze the level of implementation of rare disease patient coding across european member states, a survey was conducted by the co-leaders of the RD-Action Work Package 5. The results take into account the responses of 21 member states. Even if there is only a small number of countries who have already implemented strategies to produce statistics on rare diseases at national level, many have identified it as a priority.  The survey indicates that rare disease patients are mostly coded in health information systems by using general coding system for morbidity/mortality, namely ICD-10. However, orphacodes emerge as the main coding system dedicated to rare diseases in both inpatient and outpatient clinics. More than 50% of the countries who answered use Orphacodes to code rare disease patients regardless of the level of implementation (national, regional or local) and 70% are in the process or already have implemented the RD-Action guidelines for orphacode implementation (full article on orphanews:

Coding implementation surevy results: here