Anonymous survey launched for Parkinson’s patients to collect data for research to help determine the cause of Parkinson's disease.
The Parkinson's Database Coalition has released an anonymous survey for Parkinson's patients to complete online. The data collected will provide researchers and doctors with important information to aid in diagnosis, treatment, prevention, finding th
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An anonymous survey has been launched by the Parkinson’s Database Coalition for those afflicted with Parkinson’s disease.
The survey is for Parkinson’s patients or caregivers to complete. It covers several detailed aspects not normally acquired in a clinical setting such as certain demographics, diet, types of treatments, work and chemical exposure. The survey has 115 questions. It will be supplemented by additional surveys which will generate more specific questions based on the data received.
Once sufficient data is accumulated from the survey it will become available to researchers and physicians in a searchable database to aid in faster diagnosis, prevention, better treatment options and hopefully a cure.
The focus of this survey is to isolate specific causes of Parkinson’s disease based on accumulation of a large amount of data received directly from the patients themselves. Because the survey is anonymous it will allow Patients to retain privacy while providing valuable data for research.
There are forums available with an anonymous Parkinson’s Database Coalition I.D. to allow communications between the patients, physicians and researchers, as well as a forum for physicians and patients to communicate with each other about Parkinson’s disease.
After nearly two years of study and research on Parkinson’s disease the survey is available worldwide and will run continually. The initial survey is in English, further updates in as many as 30 different languages will be released.
The cause of Parkinson’s disease is largely unknown and making clinical diagnosis is often difficult. There are no requirements for reporting this disease, but it is estimated that as many as 10 million people are affected worldwide. Currently there are no clinical tests to detect Parkinson’s and conclusive diagnosis can only be made after death.
About Parkinson's Database Coalition
The Parkinson's Database Coalition was founded in Yelm, Wa. in June of 2012 by Steven Keller, a 43 year old patient diagnosed with idiopathic young onset Parkinson’s disease. Mr. Keller created this survey after more than a year of inconclusive testing and many different clinical opinions that provided no clear answers to the cause of his illness. He determined that there was a desperate need for a broader understanding of what causes Parkinson’s disease. This led to the creation of a detailed survey which includes many questions and aspects that are not included in making a clinical diagnosis. The primary mission is to help determine the cause of this crippling disease. For more information visit http://www.parkinsonsdatabase.net