[lindylanka]

Hi,
I am copying this letter from Joop Oele off the peoplewithparkinsons group for those who may not have seen it.

Here are the links to Joop's site. He is not a doctor, but a patient in the Netherlands.

This is the link to his questionaire:
http://www.parkinsonhuis.nl/parkinso...estionaire.htm

This is the link to results so far:
http://www.parkinsonhuis.nl/Parkinso...try/images.htm

He is posting the data quite openly, very interesting.

Read Joops info about the survey below, and post to other groups if you feel it is appropriate.

Lindy

-------------

International Symptom Poll for Parkinson Patients

January 2007 we are starting a major Poll to compile a database of common symptoms of Parkinson disease worldwide. The aim of this survey is two-fold. First it is an attempt to deal with large numbers of select data statistically (instead of aselect data). We are in the process of developing a new method for this. Second we are trying to identify “images of Parkinson's”, types, with their own specific range of features/symptoms , which might point, in due course, to their own specific disease progress.
.

In order to reach as many Parkinson patients as possible, we are looking for participants who are willing to mail this posting to relevant forums. If you read this and think this applies to you, don’t hesitate, but try not to spam any forum.

If you are a patient and suffer from Parkinson’s disease or parkinsonian
features, and are diagnosed as such by a neurologist, you are invited to fill in the form at the following location:

http://www.parkinsonhuis.nl/Parkinso...estionaire.htm

It takes about 15 minutes to complete this form. If you fill in the
questionnaire you will be contacted again after about six months. The two forms will be compared for possible signs of progression of the disease.
You need not fill in your name and the required field “e-mail” will be changed into a number when presented to anyone.

Parkinsonhuis is a website to promote insight and gather research into the
disease, set up by a Dutch Parkinson patient, a university graduate, who is
therefore, apart from having a vested interest through being a sufferer himself, intensely curious about all aspects of the disease and who believes strongly that the large community of patients can contribute to research (and maybe show the way to a worldwide database with long-term follow-up).

Yours sincerely,
Joop Oele

[DaleD]

Lindy,
This is a great poll but you must have copied and pasted the links since they didn't come out with the correct link.

I think these links will work.

Answer questions in poll:
http://www.parkinsonhuis.nl/parkinso...estionaire.htm

View results thus far:
http://www.parkinsonhuis.nl/Parkinso...try/images.htm

[reverett123]

Statistics was always a terrible subject for me. Could someone please interpret the terminology and arrangement of this data for us? Daffy, where are you?

[lindylanka]

Apologies, I did cut and paste, must remember not to next time.
Thought there might be some significant stuff come out of this poll, as a lot of the questions are things I know my neuros have never even come near addressing. I guess Joop would be glad to hear from people, he seems a nice guy.

Lindy

[Daffy Duck]

Frequency of symptoms in Parkinson's Disease :

http://www.parkinsonhuis.nl/Parkinso...try/images.htm

There are basically four lots of figures. Two of them, modal sores and symptom groups, can be disregarded. The best score to make use of is the average scores.

1. Percentage - The first is the amount of people with PD that get that particular symptom, with "Could your movements be called "slow"? being the most frequent. However, these figures do not take any account of the severity of the problem. So for example, virtually all people with PD could have slow movements, but only a bit slow according to these figures.

2. Average scores - This issue is taken account of with the next set of figures - "Average and modal scores on a 1-5 scale.". These do detail the severity because everybody has not only stated whether or not they get the symptom, but also how badly they get it. It gives two figures - an average, and a modal score. It is the average score that is most useful.

3. Modal sores - A modal sore is simply the middle score. So if the scores were 1 1 2 2 3 3 3 4 4 5 5, 3 would be the modal score because it is the middle score. When there are a lot of people responding as there are in this survey, the modal score is of no real use.

4. Symptom groups - these merely group symptoms together. They are not really well grouped and don't really add anything useful.

The rest are merely the individual scores (in Dutch).