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Stories needed to aid Parkinson’s research

Thursday June 30, 2005

June 24, 2005(Seacoastonline.com) - Your story could be the key to finding a cure. The "Don’t Be Silent: Tell Us Your Story" initiative is the first nationwide effort to compile data on Parkinson’s disease from people who have the disorder, which affects the central nervous system.

People with Parkinson’s across the country are being asked to fill out a confidential survey, which then will become part of the Parkinson’s Disease Registry, the world’s largest database of information regarding how people with Parkinson’s are managing the disease.

The initiative is a project of the Phoenix, Ariz. based Muhammad Ali Parkinson Research Center (MAPRC), part of Barrow Neurological Institute at St. Joseph’s Hospital and Medical Center.

Researchers estimate that there are up to 1.5 million people with Parkinson’s in the United States. Officials at MAPRC are seeking 20,000 survey responses to create a database to serve diverse research purposes and to help find a cure.

"Only people with Parkinson’s can tell us the full story," said Dr. Richard S. Burns, MAPRC medical director and co-principal investigator of the registry. "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."

People with Parkinson’s can complete a confidential online survey about their day-to-day experiences living with the disease. Questions include inquiries about each respondent’s medication regimen, symptoms, sleeping patterns, exercise routines, quality of life and other lifestyle insights.

Eventually, the data will be made available to researchers and clinicians looking for both a cure and better techniques to manage the disease.

The survey takes less than one hour to complete and patient privacy is completely protected.

"The secret to curing Parkinson’s lies somewhere in the minds and bodies of those with the disease," Dr. Burns said. "This registry will generate insights that have not been uncovered anywhere before, and will be the catalyst for new research studies that we hope will lead to a cure."

People with Parkinson’s are already showing an extraordinary willingness to cooperate with researchers, said Dr. Holly Shill, co-principal investigator of the registry and a neurologist at Barrow. In its first few months of existence, the Parkinson’s Disease Registry has already generated more than 800 respondents, mostly from patients surfing the Internet for information about the disorder.

"We need thousands of additional responses, though. Fortunately, in our work here, we see that people with Parkinson’s clearly want to contribute to the scientific efforts toward finding a cure," said Shill.

Participants can complete the survey online at www.parkinsonsregistry.com,

or request a printed copy with a return postage-paid envelope by calling (877) 287-7122.

"If you have Parkinson’s, please tell us your story," said Shill.

The MAPRC is a movement disorder center named after the legendary boxing champion Muhammad Ali in recognition of his commitment to the center’s programs, services and research.

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