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ORPHA:251880 – Ependymoblastoma #87

Closed OrphanetSwitzerland closed 1 year ago

OrphanetSwitzerland commented 1 year ago

Hello,

Doubt from a Swiss coder on whether to use or not the ORPHA:251880 – Ependymoblastoma for a patient.

She argues that the term seems to be outdated (or at least the Orphanet definition needs to be revised).

Please see:

Thank you

MCecile-US14 commented 1 year ago

Dear @Orphanet-AysegulSenol,

Could you please take a look at this request to update the definition ORPHA:251880 - Ependymoblastoma ?

@OrphanetSwitzerland, please note, this is not considered in our top priority list since the definition is probably already outdated but it was edited in 2014, FYI we are currently working on older definitions' revision and slowly revising newer entities :)

Kind Regards, Marie-Cécile

Orphanet-AysegulSenol commented 1 year ago

Dear @OrphanetSwitzerland,

I wanted to update you that, your request is now in the priority list and I will be keeping you updated in following weeks,

Best regards,

Aysegul

Orphanet-AysegulSenol commented 1 year ago

Dear @OrphanetSwitzerland,

I would like to inform you that a new entity "Embryonal tumor with multilayered rosettes" (ORPHA:656417) is now created (which will appear on Orphanet website by tomorrow) and the entities " Ependymoblastoma" (ORPHA:251880) and "Medulloepithelioma of the central nervous system" (ORPHA:251883) are being deprecated into this newly created entity (which will take couple of weeks) as it encompassess these two entities according to the current classification of WHO. A definition will also be provided to explain that newly created entity contains three histological patterns: embryonal tumour with abundant neuropil and true rosettes, ependymoblastoma, and medulloepithelioma.

Thank you for pointing out this issue and helping us address that.

Best regards,

Aysegul