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Rhabdoid Cancer Discussion A forum to discuss anything related to atypical teratoid rhabdoid tumors (AT/RT, AT/RhT), rhabdoid tumors of the kidney (RTK), and malignant rhabdoid tumors (MRT)

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Old 06-28-2016, 08:07 AM
BarneyS BarneyS is offline
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Join Date: Jun 2016
Location: Birmingham,UK
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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
Barney
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Old 08-20-2016, 02:43 PM
Jeff Shaddix's Avatar
Jeff Shaddix Jeff Shaddix is offline
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Join Date: Jul 2008
Location: Houston, TX
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Hi Barney,

Sorry for the delay in replying. The forum certainly doesn't see as much use these days as it did in years past, due to the increase in popularity of social media sites like Facebook. However, we do still collect information via the registry, and I provide this information to researchers, such as Dr. Jaclyn Biegel at Children's Hospital of Philadelphia. Information obtained via the registry is never shared with anyone for commercial purposes or with anyone who does not have a direct research-related need for the data, so you can rest assured your data will remain safe.

Take care,
Jeff Shaddix
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