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In the framework of the RD-CODE project, Orphanet provides a set of files, the Orphanet nomenclature files for coding, intended to be used to implement the Orphanet nomenclature in Health Information Systems for codification purposes.

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About RD-code

The RD-code project, co-funded by the European Union’s Third Health Program, intends to support Member States in the implementation of rare diseases-specific codification systems. Starting with countries that have no systematic implementation of the Orpha codification yet, but that are actively committed already in doing so, this project will provide a sufficient real-world implementation experience to be captured by other countries in the future.

In the framework of the RD-CODE project, Orphanet provides a set of files, the Orphanet nomenclature files for coding, intended to be used to implement the Orphanet nomenclature in Health Information Systems for codification purposes. This set includes directories for:

  • Orphanet nomenclature files.

  • Orphanet to ICD-10 mapping files.

  • Orphanet classifications files by medical specialities.

  • Linearization files attributing one preferential medical specialty to every clinical entity.

  • ChangeLogs for each files.

    Separately, one can find , Master file which is a subset of the Orphanet classifications of rare diseases that contains only the ORPHAcodes that should be used for data sharing and statistical purposes at EU-level ORPHAnomenclature differential file which provides changes made to the nomenclature compared to the previous version and a PDF file describing in details all files enclosed in the Orphanet nomenclature pack for coding.

    These files are generated in xml format, and made available at least once a year, in 9 different languages: Czech, Dutch, English, French, German, Italian, Polish, Portuguese and Spanish. These files are available for free download in Orphadata and also made available here in Github with the previous versions as well as their related change logs.

    In order to better understand and manage the xml files, we provide a detailed description of the Orphanet nomenclature files for coding.

    Project Homepage

    http://www.rd-code.eu/

    Questions/Requests

    Our RD-code Github repository is dedicated to treat issues related, especially to nomenclature content and nomenclature implementation in systems.

    Please post issues at our github tracker.

    You can also check FAQ page.

    How to quote

    • When quoting Orphanet, please use the following format :

      Orphanet: an online rare disease and orphan drug data base. © INSERM 1999. Available on http://www.orpha.net. Accessed [date accessed].

    • When quoting Orphadata (using xml files), please use the following format:

      Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version [e.g.XML data version].

    License

    We have chosen to apply the Commons Attribution 4.0 International (CC BY 4.0) to all copyrightable parts of our databases. This means that you are free to copy, distribute, display and make commercial use of these databases in all legislations, provided you give us credit.

    You must indicate if you have made changes to the data. This can be done so in a reasonable manner, but not in any way that suggests that Orphanet endorses you or your use. You may not apply legal terms or technological measures that legally restrict others from doing anything the license permits.

    Please consult the terms of the licence for more information.

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In the framework of the RD-CODE project, Orphanet provides a set of files, the Orphanet nomenclature files for coding, intended to be used to implement the Orphanet nomenclature in Health Information Systems for codification purposes.

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