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I took part in a clinical trial. Have you?

Just Want to Talk | Last Active: Jul 12, 2019 | Replies (20)
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@colleenyoung

@burrkay, thanks for persisting after losing your original post. I really appreciate the indepth experience you shared as do many other members, I'm sure.

I'm confused by one issue. You mention that the center nearest you was not participating in the trial My Pathways, however, your local oncologist was able to get off-label permission to administer the trial protocol, correct? Does this mean your wife's data is not included in the study?

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Replies to "@burrkay, thanks for persisting after losing your original post. I really appreciate the indepth experience you..."
All_in_1963 | @burrkay | Jun 5, 2019

Thanks Colleen...
It is important for members to know that access to a clinical trial may be “closed” in your state...as was the case for us.
However, at the time the study was available in Florida. So the process required application for the study in Florida. We did that through our Mayo oncologist in Florida.
Once approved, our local oncologist wrote a “letter of compassion” to the RX manufacturer...asking for permission to administer the protocols locally.
Otherwise, we would have been required to travel 6 hrs each way every 3 weeks for the therapy!
The manufacturer gave a positive response in very short order!

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