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Shortly after my diagnosis, I was in a clinical trial. It was not a great experience: the trial doctor belittled me, refused to take my word, and prescribed contraindicated meds. When I tried to switch study centers, I was told I could quit or stay, but I could not switch. Since I'd documented everything, eventually my request escalated to a very high level, and I was allowed to switch study centers. After that experience, I started working with a group of pd advocates on a document whose goal was to change the trial participants' role from passive experimental subject, to a respected member of the research team. It outlines participants rights & responsibilities when participating in clinical trials. We hope that it will lead to increased participation in clinical trials, bring new therapies to market, and of course hasten the discovery of a cure for Parkinson's disease. The document is the Declaration of Research Rights & Responsibilities for people with Parkinson's I hope you will read it, post your comments, and spread the word to people with Parkinson's about this important initiative. www.showusthecure.com http://www.showusthecure.com/files/DeclarationofRightsandresponsibilitiesfo%20peoplewithparkinsons_May27-2008.pdf Sincerely Jean Burns 480.883.3285 Arizona Rayilyn Brown Board Member AZNPF Arizona Chapter National Parkinson Foundation [log in to unmask] ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn