The Background Report on the “coding environment” of implementing countries has been prepared by the WP5 participants, lead by Veneto region, and with the contribution of WP4 participants. It was released in July 2019 an dit is available here. It is organized into 4 parts describing the coding starting situation of three RD-CODE participant countries…
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The Orphanet nomenclature is used to code the diagnosis of a rare disease with a unique and time-stable identifier, the ORPHAnumber (also named ORPHAcode) in order to facilitate data collection, research and analysis. These files are available here: http://www.orphadata.org/cgi-bin/ORPHAnomenclature.html They provide the computable information necessary to achieve the implementation of ORPHAnumbers in Health Information Systems,…
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A page with general information on the Orphanet Nomenclature production and maintenance and links for further reading is available: http://www.rd-code.eu/helpdesk/ Moreover a page dedicated to answering questions related to the Orphanet nomenclature content and the implementation of ORPHA codes in Health Information Systems is now avaialble here: http://www.rd-code.eu/github/ For this purpose, an online ticketing system…
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The RD-code KOM project leaflet is now available!
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…
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