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.
Written by
FMundo
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Perhaps some of the critical issues I've raised deserve 'extended shelf life' (pinned posts on the right) . . . I suggest under a new title category: Changes required for Participation.
You are so right! I am also firmly in favour of clinical trials and clinical research. But I know from experience that things can go wrong and to my surprise, I have discovered that people often don't want to know about it. The results are what they are, good and bad together, equally valid. That's science. We learn from all the outcomes not by sweeping the ones we don't like under the carpet. Putting a falsely rosie gloss on things does no one any favours, we should go into trials with our eyes open.
Hi FMundo like you, at CISCRP, we believe in the importance of clinical trials. It is CISCRP's mission as a nonprofit organization to educate and inform the public (patients, medical/research communities, the media and policy makers) about clinical research. We agree that physicians should have information about clinical trials for their patients which is why we develop educational materials for distribution. Our other resources, programs, and services help us assist clinical research stakeholders in understanding public and patient perspectives in order for them to improve volunteer participation experiences and satisfaction. We also agree that trial results should be shared. Our Communicating Results team works to provide lay language summaries to study volunteers. While this is not currently a requirement in the U.S. our team has worked with many American research sponsors to provide summaries and we continue to see this practice growing.
The purpose of this HealthUnlocked community is to support our mission of educating and informing about clinical research, which is why our Admin topics are primarily focused around providing information and generating discussion about clinical trials.
We do of course encourage our community members to share their own experiences with clinical trials – whether it be a good experience or ways that they wish it could have been improved – in an effort to foster open dialogue.
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