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Real Life Stories Needed To Assist Parkinson's Research For World's Largest Database 27 Jul 2004 Muhammad Ali Center launches “Don’t Be Silent” initiative to compile world’s largest Parkinson’s database. Your story could be the key to finding a cure. The “Don’t Be Silent: Share Your Story” initiative is the first nationwide effort to compile data on Parkinson’s disease from people with the disease. People with Parkinson’s across the country are being asked to fill out a survey, which then will become the world’s largest Parkinson’s database. The initiative is a project of the Phoenix-based Muhammad Ali Parkinson Research Center (MAPRC), part of Barrow Neurological Institute at St. Joseph’s Hospital and Medical Center. “Only people with Parkinson’s can tell us the full story. They 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, MAPRC medical director. The theme of the initiative is “Don’t Be Silent – Share Your Story.” It asks people with Parkinson’s to complete the confidential on-line survey about their day-to-day experiences living with the disease. The data will be available to researchers and clinicians looking for both a cure and better techniques to manage the disease. When at least 20,000 people complete the survey, the data will achieve the critical mass necessary to serve research purposes, Burns said. The survey takes less than an hour to complete and patient privacy is totally protected. “The secret to curing Parkinson’s lies somewhere in the minds and bodies of those with the disease. This registry asks those people to share their knowledge with us. The combination of their intimate familiarity with Parkinson’s and state-of-the-art research could be the answer we’re all anticipating,” Burns said. People with Parkinson’s have shown an extraordinary willingness to cooperate with researchers, said Dr. Holly Shill, neurologist at Barrow. Patients clearly want to contribute to the scientific efforts towards finding a cure, Shill said. The MAPRC is a Movement Disorder Center named after the legendary Muhammad Ali in recognition of his commitment to the Center’s research. It is part of Barrow Neurological Institute, located in Phoenix. Participants can request a copy of the survey by calling 1-877-287-7122 or access it on-line at the MAPRC Web site: http://www.parkinsonregistry.org Media Contact: Sue Kern-Fleischer, E.B. Lane Marketing Communications Cell: (USA) (602) 810-1404 SOURCE: Medical News Today - 27-Jul-2004 http://www.medicalnewstoday.com/medicalnews.php?newsid=11284 * * * ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn