Addition of nerve sheath tumor subtypes?

[Robert Allaway]

Hi there,

Could I request the addition of the following nerve sheath tumors?

Neurofibroma subtypes:

Plexiform neurofibroma: https://ncim.nci.nih.gov/ncimbrowser/ConceptReport.jsp?dictionary=NCI%20Metathesaurus&code=C3279070

Cutaneous neurofibroma: https://ncim.nci.nih.gov/ncimbrowser/ConceptReport.jsp?dictionary=NCI%20Metathesaurus&code=C3279069

Atypical neurofibroma: https://ncim.nci.nih.gov/ncimbrowser/ConceptReport.jsp?dictionary=NCI%20Metathesaurus&code=C1510961

Schwannoma subtypes:

Vestibular schwannoma: https://ncim.nci.nih.gov/ncimbrowser/ConceptReport.jsp?dictionary=NCI%20Metathesaurus&code=C3549435

low grade glioma (encapuslated glioma?) subtype:

Optic pathway glioma: https://ncim.nci.nih.gov/ncimbrowser/ConceptReport.jsp?dictionary=NCI Metathesaurus&code=C0796418 (NCIT calls this visual pathway glioma, but it's my experience that it's more often called optic pathway glioma)

Thank you!

Best,

Robert Allaway

sr scientist

sage bionetworks

seattle, wa

[ritika...@gmail.com]

Hi Robert,

Not sure if my last post got sent. 

Apologies for the delay and thank you for the suggestion.

We are currently working on updating CNS nodes based on WHO classifications as well as pediatric nodes. I will however share your suggestions with the committee and update you with their feedback.

Thank you again,

Ritika

[Robert Allaway]

Thank you very much, Ritika! Glad to hear that these nodes are under revision!

Cheers,

Robert

[Robert Allaway]

Hi there,

I just wanted to follow up on this to see if these were still being considered for addition. Thanks!

Best,

Robert

[Robert Allaway]

Hey there,

I was just wondering if it would be possible to add these terms? Thank you!

[ritika...@gmail.com]

Hi Robert,

Apologies, we will have this in before the end of next week.

Thanks

Ritika

[ritika...@gmail.com]

Hi Robert,

We got some advice about the suggestions and please see below:
 To add:

Neurofibroma subtypes   

Cellular neurofibroma; 

atypical neurofibroma / atypical neurofibromatous neoplasm of uncertain biological potential; 

plexiform neurofibroma; 

diffuse neurofibroma; 

nodular neurofibroma; 

massive soft tissue neurofibroma

 

Neither vestibular schwannomas nor optic pathway gliomas are recognized as distinct entities.

We will proceed as suggested by the committee above.

Ritika

[Robert Allaway]

Hi Ritika, 

Thanks for the feedback. Just to check, what about cutaneous neurofibroma? 

Thank you,

Robert

robert allaway (he/him)

associate director, rare disease

sage bionetworks

on central time, working remotely from kansas city, mo

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