- Database -
For all intents and purposes, the Parkinson’s Coalition Database SurveySM is designed with the Parkinson's patient in mind. The goal is to accumulate all possible pertinent data from people that have been diagnosed with Parkinson's disease, and to make it available to Practitioners, Researchers and Scientists alike.
One of the key failures in the study of Parkinson's patients is the lack of empirical data. A majority of the studies that are undertaken for Parkinson's symptoms and causes only incorporate between 400 and 2000 patients. This does not provide researchers with a significant cross section of the Parkinson's population when there are possibly over one million people in the U.S. alone that are afflicted and nearly 60,000 new cases diagnosed annually. Those numbers incidentally, have not changed in nearly 15 years. The numbers are inevitably much higher.
Studies and clinical trials frequently contain many exclusion criteria that further narrow the field in regards to symptoms and possible causes making it much more difficult to isolate the direct causes of Parkinson's limiting the range of potential treatments. It is imperative that all possible factors are included in patient surveys and that they include a very broad sampling of the Parkinson's population. The exclusion criteria must be only limited to people that are diagnosed with Parkinson's, nothing more.
What we are proposing is to asking ALL of the pertinent questions to as many patients as possible. These are the questions that Doctors frequently fail to ask or quite simply do not have the time to ask. As data is compiled directly from the patients we can move forward to include or exclude possible causes and find the common threads that lead up to a diagnosis of Parkinson's.
This is an entirely new concept in the study of a disease. Studies most often rely on data that is submitted by physicians and researchers and is often limited in scope. Diagnosis is most often made Even with a recent update, the UPDRS is dated and includes only a limited number of questions, all of which are based on the presence of physical symptoms and ability to function. Causal factors are not included in the rating scale. This provides a pathway for symptomatic treatment. We currently have 115 individual questions. There are hundreds of answers almost entirely composed of check boxes and drop downs. We felt it would be much easier for Doctors and Researchers to sort and interpret the data in this format.
We must focus on information relating to the cause of the disease. 'Parkinsonism' is often given as the diagnosis when there is no known cause for this disorder. What is even more unfortunate is the narrow minded approach by specialists when there is a diagnosis. I base this on personal experience. As an example, I have asked several different Neurologists that specialize in movement disorders if this could have a secondary cause such as Cancer, Celiac, Bacterial or Viral infection. Alarmingly each time I brought up this question to their attention and requested testing to eliminate these causes I was told that it is very possible that these problems could be causing my symptoms, but they were not willing to test for these specific possible causes primarily because of expense. Essentially I was denied the specific testing that I requested and was put on a symptom based maintenance program. This method of treatment and diagnosis is absolutely unacceptable with a disease that has no specific known cause, yet it is the first and only course of action. I do not understand how it is possible to eliminate very legitimate known possible causes without doing specific testing that is in fact available. I know that many of you feel the same frustrations.
We will ask as many questions as possible of patients. The survey is free to Patients and completely voluntary. You do not have to answer all of the questions (all are mandatory, but most offer a 'no answer or 'other' response), but we ask that you answer with 100% honesty. Your information is anonymous to Researchers and Physicians with the exception of your postal code. Such Questions will include:
· Demographics: ZIP Code, Age, Race, etc.
· Social Status (Types of work performed)
· Medications and Effects
· Possible Chemical Exposures
· Diet (Types of foods and Drinks consumed regularly)
· Extracurricular activities
· Genetic Possibilities (Family members diagnosed)
· Medical Evaluations
· Daily life
...and any other aspects that may be pertinent.
Again, this database does not require personally identifiable information outside of your ZIP Code. It is not a narrowly focused one sided point of view from a Doctor. Only you as the patient can complete the forms because you are the only person capable of providing all of the answers. You will be assigned a random number for registration. We do not request personal contact information.
The survey contains many questions and may take some time to complete. You can only complete each section once (although you can save the survey and return at any time), so please answer truthfully and as completely as possible. (Remember that this is completely anonymous and that we do not track IP addresses or URL's. You must enable cookies to prevent duplicates) There will certainly be items on the survey that you may not be familiar with or that you may need assistance completing. In these cases, please refer to our links page for links to medical dictionaries and information along with links to Parkinson's information and resource sites. You will not be given the option to print the question for your Physician to help you complete (you must use print screen). If you cannot complete a question you must skip the entire question and complete it later. A question will not be available on subsequent logins if you complete any portion of it. The only exception will be if you have undergone further pertinent testing and wish to enter a positive or negative result. In this event, you can contact us and we will re-create that portion of the survey for you to complete.
It is imperative that we as Parkinson's patients collectively assemble this data base to find our similarities whether it be circumstantial, geographical, racial, social or otherwise so that we can truly make sure that is is not falling upon deaf ears. It is up to us to ensure that our symptoms and lifestyle factors included in this data. Physicians and researchers must have the ability to consider and review all factors related to individuals with Parkinson's in part and as a collective group.
I know personally how challenging it can be to explain what is happening physically and emotionally. I have seen over 40 Doctors and had a barrage of tests done. I still do not feel to this date that I have received any answers, when I know they are out there. I have done everything I have been told and ended up with these insufficient answers due to a true lack of knowledge, understanding and broad based data collection on this crippling illness.
I do not believe for a second that our Doctors do not want to find a cure. I honestly believe that they have not been provided the proper resources to be able to solve this Neurological mystery that many of us are afflicted with. We can give them that if we all work together. It is time to stop the suffering that we endure. It is time to stop accruing the 50 to 60,000 dollars in medical bills for diagnosis and driving up the cost of our insurance. It is time to find a cure.
This is a quest to get everyone together and do what it takes to help us find the source and the cure for Parkinson's and related diseases.