ORPHANET Main-Help-Desk

About OD4RD project

https://od4rd.eu * OD4RD(2) project generally aims to advance the **implementation of ORPHAcodes** in hospitals hosting the European Reference Networks (ERNs). The OD4RD(2) project builds on the specific Orphanet expertise, and on its organisation as a long-lasting, well-established network, to fullfil the following general objectives: 1. To contribute to the generation of standardised, interoperable data on RD diagnosis for primary and secondary use, by the maintenance and the support to the implementation of the Orphanet nomenclature of RD. 2. To contribute to the harmonisation of data collection amongst settings (health records, registries) and amongst countries, by the dissemination of good coding practices at the data source level. 3. To contribute at supporting evidence-based decision-making in the frame of the European strategy around ERNs, by supporting the exploitation of reference corpus of data and information on RD. * OD4RD(2) National Hub teams: Austria, Belgium, Czech Republic, Estonia, Finland, Germany, Ireland, Italy, Latvia, Lithuania, Netherlands, Norway, Poland, Portugal, Romania, Slovenia, Spain, Sweden and Switzerland * OD4RD2 National Hub coordination: Germany and Sweden * Orphanet coordinating team: France @MCecile-US14 Orphanet Nomenclature manager + scientific coordination of OD4RD National Hubs @Orphanet Orphanet deputy director + IT team leader @sylmaiOR Orphanet international coordinator @caterina-lucano-orphanet Orphanet disease team leader + classification manager @davidlagorce Orphanet IT + data science manager @moi-epiUS14 Orphanet epidemiology manager @Orphanet-MartaFructuoso Orphanet Nomenclature + ERN collaborations manager @carolina-f Orphanet RD clinical signs manager @Orphanet-AysegulSenol Orphanet Nomenclature and RD definitions manager @Mickael-Orphanet Orphanet Nomenclature and gene manager

Questions/Requests

Our OD4RD Github repository is dedicated to treat issues related to ORPHAcoding, especially to nomenclature content and implementation in systems. Please post issues at our github tracker.

For standardized reference Orphanet answers please check FAQ page.