medizininformatik-initiative / kerndatensatzmodul-diagnose

Kerndatensatzmodul Diagnose
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CodeSystem for Orphanet is missing #37

Open jpwiedekopf opened 7 months ago

jpwiedekopf commented 7 months ago

The CodeSystem for OrphaNet is missing.

There is a "terminology pack" available from Orphadata, and, after consulting Josef Schepers, I believe that converting the CodeSystem to FHIR should be somewhat easily doable.

I believe the legal notice of Orphadata allows this kind of use:

The INSERM holds all intellectual property rights concerning the structure of the database, the format of the website, the logo and copyright, as well as the data and information on the site (content, texts, classifications, nomenclatures, and press statements). No element or part of the site (including, but not limited to, the database and the information contained within) can be copied, translated, reproduced, exploited, published, electronically stocked or redistributed for commercial use without prior written consent. [we are not commercial use] Large extraction of data from orphadata.com for use in another information system is allowed for any non-commercial use. However, INSERM US14 allows the user to reproduce all or part of the site’s content, in one saved or printed copy. This right applies strictly to personal, private and non-collective use of the material. 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.

jpwiedekopf commented 2 weeks ago

See https://gitlab.com/mii-termserv/fhir-resources/fr.inserm.orphanet.nomenclature and the NPM package at https://gitlab.com/mii-termserv/fhir-resources/fr.inserm.orphanet.nomenclature/-/packages. The SU-TermServ server will provide this package for OrphaNet - a VS can now be defined.

This package is based on the ballot version of the BfArM's NTS.