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The Parkinson Pipeline Project, of which I am a member (www.pdpipeline.org) has been asked to write an article for Neurotherapeutics - a journal published by ASENT ( American Society for Experimental Neurotherapeutics) on patients' viewpoints of ethics in neuroscience research. We are including opinions and quotes from patients about a number of issues about participating in clinical trials, and would especially like to get opinions of people who have volunteered for trials. If you are interested in your viewpoint being included, please respond to the following questions. You can respond offline, by sending your reply to me at: [log in to unmask] Your name or any identifying information will not appear in the article. You can choose not to answer all of the questions. It is up to you whether or not to mention which trial you participated in. Thanks for your help, Linda Herman 1. Why did you volunteer? Was either access to treatment in the randomized study, or access to treatment in extended open label studies important to your choice? How did the access to new treatment compare to aiding science in your decision to participate? Or to what you would learn from the participation? What was the most important to you? 2. Did you get placebo? Did you think you received a placebo during the blinded part of the trial? (if it was a placebo-controlled trial)? If you did receive a placebo, did you experience change in symptoms, how long did changes last? 3. What was primary outcome? 4.How long were you tracked, did clinical improvements continue to increase, decrease or stay the same? 5. Were there other key measures? Were imaging or other markers used?. How did they change over time? 6. Were you satisfied with the feedback and reporting to you of findings from your data, and with privacy of data? 7. Did the informed consent (IC) cover how you would be treated if the study was terminated early? 8. Did the IC explain the risks? What were they? With respect to unknown effects of treatment? with respect to surgery? 9.Was the placebo effect explained to you? And were you given any strategies to minimize placebo effects? 10. Did the sponsors of the study explain how you would benefit if the trial proved successful and how you may be harmed if there were problems with your treatment or with the overall study (for surgery was it explained that acceptance of this treatment would likely make you ineligible for future experimental trials?) 11. Would you be less interested in a study sponsored by a company with significant ethical violations (conflicts of interests, such as failure to disclose data to advance science or to monitor safety in community settings, failure to live up to agreements with patients about conditions in the study or with ongoing clinical tests. ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn