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The source of this article is Tribune Review: http://tinyurl.com/9x6fa Patients' stories needed for Parkinson's research By The Tribune-Review Monday, May 9, 2005 Researchers hoping to compile information about Parkinson's disease say patients' own stories could hold the key to a cure. "Don't Be Silent: Tell Us Your Story" is the first nationwide effort to learn more about Parkinson's directly from people who have the central nervous system disorder. The first-person accounts are being compiled by the Muhammad Ali Parkinson Research Center, based in Phoenix. "These are the people who understand the impact of the disease better than anyone, so we are asking them to share their knowledge with doctors and researchers," said Dr. Richard S. Burns, medical director at the center. About 1.5 million Americans have Parkinson's, a chronic, progressive disorder that causes tremors, stiffness and bradykinesia, or slowness of movement. Doctors believe the disease is caused by a genetic predisposition, possibly coupled with environmental factors that have not yet been identified. Although Parkinson's is not fatal, it has an impact on everyday life. Pope John Paul II and boxer Muhammad Ali, for whom the center is named, are among the well-known figures whose conditions have drawn attention to the disease. Survey participants will be asked to complete a confidential, online survey that takes less than an hour to complete. Results will be entered in the Parkinson's Disease Registry, a project under the direction of the Barrow Neurological Institute at St. Joseph's Hospital and Medical Center in Phoenix. Responses will be kept private, and there is no charge to participate. The data will be used in summary form only when it appears in scientific publications. Eligible respondents will be notified about clinical trials but are under no obligation to join them. Eventually, the survey data will be made available to doctors and researchers who are looking for a cure or developing techniques to better manage the disease. To achieve its goals, the center hopes to have 20,000 Parkinson's patients fill out the survey. It is available online at the center's Web site, www.parkinsonregistry.com. Patients without access to a computer can request a printed copy of the survey, along with a postage-paid envelope to return the results, by calling 877-287-7122. ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn