Don't Be Silent: The Parkinson's Registry

Main Category: Public Health
Article Date: 27 Jul 2004 - 11:00 PDT

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-- The Parkinson's Registry is the first nationwide (USA) survey to compile data on Parkinson's disease from people with the disease.

-- The registry will become the world's largest database about living with Parkinson's disease.

-- It is a project of the Phoenix-based Muhammad Ali Parkinson Research Center (MAPRC), at Barrow Neurological Institute, St. Joseph's Hospital and Medical Center

-- To achieve its goals, the registry needs 20,000 of the nation's 1.5 million people with Parkinson's to fill out its survey.

-- The registry's survey takes less than an hour to complete and patient privacy is totally protected.

-- Participation in the registry is voluntary, confidential and free of charge.

-- Respondents will be notified of clinical trails for which they may be eligible, but no one is obligated to enter the trials.

-- Respondents will be asked to update the questionnaire every six months.

-- Respondents may be asked to complete additional surveys for Parkinson's research.

-- Data provided will be used in scientific publications, in summary form only.

-- Names will not be sold for advertising or fund raising.

-- 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

-- The MAPRC is the 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.