NWPF

News ArchivesRead News

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.

Recent News

Apr 25 - Lifestyle: Dating with Disease
Apr 25 - Scientific breakthrough in fight against Parkinson's and Alzheimer's
Apr 20 - Breakthrough Parkinson's disease blood test
Apr 12 - Tissue biomarker for dementia with Lewy bodies and Parkinson’s disease
Apr 11 - Yoga for Every Body: Experts say yoga can ease pain and improve mobility for people with neurologic conditions
Apr 9 - Commonly prescribed Parkinson's drugs up risk of compulsive gambling, shopping, binge eating, hypersexuality
Apr 7 - Pfizer and IBM Launch Innovative Research Project to Transform Parkinson's Disease Care
Apr 7 - Parkinson's Drug Highly Effective for Resistant Depression
Apr 5 - Speech therapy program helps Parkinson’s patients regain speaking ability
Apr 4 - New research maps out pesticide exposure and Parkinson's disease in Nebraska
Apr 4 - The rogue immune cells that wreck the brain
Mar 28 - Chemists identify structure of protein that forms fibrils in Parkinson's patients
Mar 25 - UPDATE 1-FDA staff says Acadia's drug for Parkinson's disease psychosis is effective
Mar 23 - The virus that could cure Alzheimer's, Parkinson's and more
Mar 21 - Antipsychotic drugs may do significantly more harm to Parkinson's disease patients
Mar 21 - Rosacea Might Boost Parkinson's Risk: Study
Mar 21 - Apple CareKit Could Completely Change What It's Like To Live With Parkinson's Disease & Epilepsy
Mar 17 - Coach Improves Health and Turns Around Texas A&M
Mar 11 - Lifestyle: What I Learned Training for 'American Ninja Warrior'
Mar 4 - Lifestyle: The art and heartbreak of caregiving