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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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@2011panc

@colleenyoung The trial requires you to be more than one year post transplant. Readings are taken twice, one year apart. The additional testing is, to me, minimal. The testing for the BRCA gene was part of this trial, otherwise I would not have had it done because I have no other indications of a need for this testing. Not all testing results will be automatically released to me, but I am sure the BRCA gene test will be provided to all participants because it is such an important test in relation to successful treatments. I cannot say that the testing gives me comfort, per se. Knowing my particular and diverse medical history encouraged me to pursue this trial, as I believe that I have much to offer in many areas and for many people. I do not expect changes for myself, but hope to provide a better outcome for other people that may need to address any of the same issues with which I have dealt or am not dealing.

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Replies to "@colleenyoung The trial requires you to be more than one year post transplant. Readings are taken..."

@2011panc, you hit on something there. Some clinical trials provide potential benefit to the study participants as in the case of @burrkay's wife. For Erin @user_chdb5e8ac the benefit of finding a treatment center (Mayo) and a diagnosis was a tangential benefit of participation. However, some trials offer no immediate benefit to the participants. Rather the data collected is invaluable to advance science and benefit future patients. It sounds like that has been a rewarding experience for you.