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Susan Tew's avatar

Thank you Dr. Mohyuddin for your insight on this challenging, complex and important subject. Having spent the last year fighting myeloma we have learned that the patient and family needs to do significant reading, thinking and consulting on decisions around clinical trials. While they are important in advancing our knowledge, to do so at the expense of the patient seems unethical. You are a true patient advocate.

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Fla Mom's avatar

I was taught that a trial is only ethical if it is *unknown* which arm would have the better outcome. Was there no data safety monitoring board on the CASSIOPEIA trial? Or does outside data, showing the trial is no longer ethical because which arm has better outcomes is now known, not fall under their bailiwick? Does true informed consent, a notion that seems to be almost a distant memory, as it was intended, not extend to updated information during a trial, when there is new information pertinent to a subject's informed decision to remain in the study or not? We do have to guard against situations like those that happened with AZT and the COVID injections, though, where the trials were stopped, blind broken, and placebo/comparator arm given active intervention after only a very short period, since there's no way to know about longer-term adverse events than to have a placebo/comparator arm.

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