Parkinson's Database Coalition
We can safely assume that if you have come to this site, you either have Parkinson's or know someone who does.
Parkinson's has come to describe a set of neurological deficits that occur within the brain. Symptoms can occur at any age, but typically occur somewhere between the age of 40 and 60. Parkinson's can take on many different faces, affects people in different ways and progresses at different rates. It is quite misunderstood.
There are different variations of Parkinson's which are known as Parkinson's plus syndromes. These are typically more aggressive and have more distinguishable features as they progress. These types can often be detected through tests once they have reached a certain stage.
Secondary Parkinsonism is caused by certain medicines, other nervous system disorders or other illnesses. It is often impossible to distinguish between this and Parkinson's as there is no definitive testing.
It is truly unknown how many people in the World have Parkinson's. Estimates in the United States can range from 500,000 to 1.5 million. Physicians are NOT required to report active cases of Parkinson's to the C.D.C. or W.H.O. That does mean that the incidence could be much higher. Worldwide the number could exceed 10 million. (That is just cases that have been clinically diagnosed)
Parkinson's and other Neurological disorders demonstrate abnormal aggregations or misfolded proteins in the brain. What causes this to occur is not understood. It is a complicated matter and much research is underway to try to understand it. There are some instances that are known to be genetic, but this is a small percentage. The only other known factors that have actually been identified are chemically induced.
Currently there is no cure for these diseases.
Our mission is fairly simple. We want to accumulate as much pertinent data on Parkinson's and related diseases as possible. We believe that this data and information needs to come from the patients themselves to paint a much clearer picture of this disease for researchers.
Our approach is unique in a couple of ways:
We do not want your personal information. We believe that we will receive a much wider and more honest responses by providing you anonymity.
We DO NOT send mailers (either electronic or physical), solicit funds or donations or engage in any type of 'Public Fundraising' activities. Research money should be spent on research, not propaganda and massive overhead costs.
The data accumulated will used to create more specific surveys questions based on the responses received. In addition to this, new questions will be generated by Researcher and Physician request as well as by Patient suggestions. We are not afraid to ask any question at least once to either include it as a possible cause or exclude it and move on. Every suggested question gets included. No one understands this illness like the Patients themselves. Research money should not be wasted on dead end studies. Research should be based on solid evidence accumulated through large scale data collection, not a study of 20 people.This has proven quite successful in Countries outside the United States. The margin of error is actually quite low.
We believe that Physicians and Researchers as a community should be the ones to make the decision on what research is funded based on the data accumulated. We have a plan for this.
We want to isolate the causes of Parkinson's and provide the opportunity for better treatment, prevention and hopefully a cure.
We believe that the mass accumulation of data for Physicians and Researchers will provide better treatments and faster diagnosis. It will promote collaboration while at the same time creating competition and breathing new life into finding a cure.
We have a funding concept for research that will eliminate all of the red tape and time consuming efforts to get valid funding for research. It is not based on donations, receiving grants or collecting from corporate entities that have a special interest in the outcome.
Research funding shouldn't be difficult and convoluted. It should also be provided immediately without bias for valid research when there is a medical consensus to pursue that research. This is about finding a cause and a cure, not lining the pockets of an individual or an organization.
We DO NOT accept or solicit donations from Parkinson's Patients, Corporations or individuals.
Please note that all information regarding the Parkinson's Database Coalition and Parkinson's Database survey or any interpretation thereof is herein subject to U.S. Copyright Law Title 17, U.S. Trademark Law Title 15 and U.S. Patent Law Title 35.
Parkinson’s Database Survey © 2013
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