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Old 06-28-2016, 09:07 AM
BarneyS BarneyS is offline
Join Date: Jun 2016
Location: Birmingham,UK
Posts: 1
Question Rhabdoid Registry

Hi Forum,

I'm a new member and the dad of a beautiful 2 year old boy with an AT/RT brain and spine tumour diagnosed 8 months ago but it is sadly refractory to treatment so far.

I'm a little new to Forums and a bit cautious, but wonder if being part of this can help us with the next stage in his treatment journey. However, looking at the posts a lot of them seem to be from a few years ago. I therefore wanted to post this to see who's listening please.

My first question is who is using the Rhabdoid Registry? Before I enter my sons details could someone let me know if it is still active and being used by medical researchers, also if we, as parents are able to access it?

I hope to follow with posts to see if the community can help us with our next challenges too....

Many thanks
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