OD4RD / Main-Help-Desk

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Access to classifications as Excel files for external users #231

Open Orphabe opened 5 months ago

Orphabe commented 5 months ago

Dear Marc, dear all,

We received a request to obtain the classification of rare skin diseases from a clinician of the Cliniques Universitaires Saint-Luc. They consider that the Nomenclature Pack for coding is too complex for the intended use, which consists of selecting the relevant ORPHAcodes in the context of their clinical practice. So, as I do when I receive this type of requests, I provided the Arbor classification in the form of an Excel file. However, the clinician would have liked to receive it in French, which to my knowledge is not possible in this format.

During the OD4RD2 Mid-term meeting, you mentioned that the need for clinicians and coders to have access to classifications as Excel files is well known and that reflection is underway on this subject (with the difficulty that Arbor does not have the same temporality as the Nomenclature Pack since Arbor is continually updated, which could create some confusion).

2 questions: 1) Do we have an idea of ​​the schedule regarding this possible evolution of the Orphanet site? 2) Will the classifications then be available in several languages ​​or only in English like in Arbor?

Thank you very much for your feedback, kind regards,

Annabelle (Orphanet Belgium)

MCecile-US14 commented 5 months ago

Dear @Orphabe [edit] Thank you for your request. Evolution(s) regarding the classification in the Orphanet website are scheduled as a second step of development of the "new" version of Orphanet website. This was mentioned during the mid-term OD4RD2 meeting as a coming development in order to provide an easier and better access to Orphanet Nomenclature and classification data. We do confirm Orphanet classifications will be visible in a hierarchical drop down menu in all translated languages but no export or download options have been validated. A technical meeting is scheduled early July to discuss better about this, @Orphanet will keep you posted when decisions are made with an official timeline.

Kind Regards, Marie-Cécile

Orphabe commented 5 months ago

Thanks M-C for this info.

We are receiving more and more requests from clinicians and coders to receive classifications in Excel files, so this development will have great added value for the Orphanet-users.

Thanks for the good work! Kind regards,

Annabelle

MCecile-US14 commented 2 months ago

Kind reminder @Orphanet, could you please update @Orphabe if any decision has been made ? Thank you,