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09-09-2007, 12:38 PM | #1 | ||
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In Remembrance
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The PD Pipeline project has posted the results of the survery about sham surgery at:
http://www.pdpipeline.org/whatsnew/shamsur_survey.htm We are just about finished with a first draft of a PD trial participant Bill of Rights. There is increased interest in this area now. if you have an experience that you would like to share about a clinical trial, please post or contact the Pipeline Project at: http://pdpipeline.org/aboutus/request.htm Your input is valuable in choosing what goes on this document. Thanks all, Paula
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paula "Time is not neutral for those who have pd or for those who will get it." |
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09-09-2007, 12:57 PM | #2 | |||
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Senior Member
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I think this is a really important topic (clinical trials).
There is a group of people, including, at least, on this forum Paula and JeanB, who have been working hard to craft a document that will protect the rights of patients in clinical trials, and thus, hopefully, make the prospect of joining one more palatable. It is a complicated issue. Take "risk" for example. It is a concept without one, single meaning. Maybe people with a life-threatening disease would like to be able to accept more risk when entering a trial. How does the system balance risk? Can they make a completely risk free trial? Should they? How do we make sure that participants actually understand the risk they are taking? (i.e. the woman who just died from the gene therapy treatment - did she really understand the risk? if she did, would she have signed on? would a person whose life was at stake be willing, and be allowed, to take more risk?) JeanB makes a wonderful point in her thread about her experiences as a participant in clinical trials, that "It's easy to talk about the problem. It's harder to be part of the solution." Being part of the solution does not necessarily mean signing up right now for a clinical trial. It also means helping to make the system better for patients so that more trials can go forward more quickly - and maybe making you feel more at ease in joining a trial yourselves. If you don't feel comfortable joining a trial, or even if you do, please think about participating in the process by letting your views be known by giving your input at http://pdpipeline.org/aboutus/request.htm Thanks to Paula, JeanB, Carolyn, and anyone else who are using their time, talents, and bodies to advance our cause!
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Carey “Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony Last edited by indigogo; 09-09-2007 at 02:27 PM. |
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09-09-2007, 05:24 PM | #3 | ||
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In Remembrance
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Thanks, nice post Carey. When we start out thinking about clinical trials, we think mostly about whether or not the treatment will work or will it help me. But two of the deaths that we have recently heard about (each involved brain surgery but not the same trial) were caused from complications from falls.
This allows the sponsor to claim the death was not their responsibility and to not honor their commitment to cover medical care. Falling is one of the top reasons for all pwp deaths. Brain surgery may make this a very high risk - higher than it already is. Hospital staff must be made aware of this and the Informed Consent must include it. We want to be sure and include every valid thing we hear about, thus the request above. If you are in a trial involving brain surgery....has it affected your balance? paula
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paula "Time is not neutral for those who have pd or for those who will get it." |
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09-09-2007, 07:29 PM | #4 | |||
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Magnate
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Quote:
Quote:
If you have had an incident or concern about a trial you were involved in, now is the time to voice that concern. My recent CERE-120 trial has been a big part of what the documents contains. GO CLINICAL TRIALS...but with care and dudiligence by all patients!
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You're alive. Do something. The directive in life, the moral imperative was so uncomplicated. It could be expressed in single words, not complete sentences. It sounded like this: Look. Listen. Choose. Act. ~~Barbara Hall I long to accomplish a great and noble tasks, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker. ~~Helen Keller |
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