I hate to co-opt a favorite phrase of a vice president who was booted out of the job because he was convicted of tax evasion during the Nixon Administration . . . " (Spiro Agnew) . . . but it seems it might describe the way some people feel about me and my perspective on Clinical Trials.
If it is, it's dead wrong. I am a firm supporter of CT's and feel that my life, our lives and the future lives of those people yet to be diagnosed with PD (and most other diseases) is very much dependent on the outcome of Clinical Trials . . Done Right.
What is "wrong" with Clinical Tests is that they are often not registered, not reported and thus not available to physicians to make decisions. And the people in the strongest position to "fix" this problem - those who underwrite the trials are either appear to have no interest in the problem . . . or have a vested interest in NOT reporting unsatisfactory results. The consequence is that we all lose - those who participated in the Trial, MD's deprived of important information and future patients denied the benefits of good decision making. The fact that the cost of care for trial participants who experience bad outcomes... is not covered is simply unacceptable from an ethical standpoint. Covering this contingency should be planned for simply as a "cost of doing business".
My suggestion is that rather than focusing on peripheral issues like "educating" prospective Trial Participants on issues like "why you should participate" or "how you find a trial" HealthUnlocked discussion should zero in on foundation issues that very much influence whether or not Trials are working effectively in accomplishing their intended goal, providing needed input so that the industry can clean up their act.