Let's start with some good news: there have now been 60 replies to the survey. About half of these are due to Conductor71's promotion. I thank her for this and for her posts in defence of the survey.

Let's go on to find (I hope) some common ground with soccertese. I think everyone who has replied to this thread or completed the survey is a PwP. Probably most of us have declined to a state where we are not optimistic that "big science" will find a cure soon enough to save us.

Now let's try to discover the reasons for soccertese's disapproval.


soccertese,

Do you feel we could get more out of the some of the anecdotal based threads if we quantified effects? (I do, I wrote the online arm movement and tremor measurement tools.)

Do you agree we could get more out of the anecdotes if we aggregated the results?

Do you agree that the scientific method is wider than hypothesis then test?

Do you have a problem with the study of handedness and Parkinson's?

Do you have a problem with the fact it takes 60 seconds to complete the survey?

Do you have a problem with the implementation of the survey? (A couple of people gave me contructive criticism, which I accept totally.)

You ask "what exactly is your hypothesis"? I started in data mining mode with no hypothesis, just a hope that the data would include something interesting. As it is, with the data received so far I do make a hypothesis: regarding right handed people with onset under 60, men are less likely than women to have first symptoms on the left side.

You ask "what do you plan to do with the data when done?" The data is and will continue to be open to everyone, as are the data collection, analysis and measurement programs I've written.

You write "your're really not taking a random sample, just very motivated pd'ers". That's absolutely true. At first glance this is a problem, but in fact for many of us on the forum this is the sort of person we are most interested in.

Finally, you mention Darwin. He was born about 30 miles from where I write. When he set off in the Beagle he had not conceived of natural selection. He collected a huge number of specimens first and formulated his theory later. He was a data miner.

John

john,
i stated my opinion, best of luck.

now as far as your statement "Probably most of us have declined to a state where we are not optimistic that "big science" will find a cure soon enough to save us."

i'm not optimistic but i see some hope and a lot of potential clinical research that could use more funding.
imho we need more "big" science, not less, not easy to get anything past the BBB and to the correct part of the brain, much less quickly find enough pd"er's to run a clinical trial that requires brain surgery. one problem with phase2 trials is sample size is so small that 1 patient can skew the results and only 1 procedure can be tested, imagine if they could double the sample size? so i'm much more interested in making "big science" more productive rather than mining data for some reason to be determined later. if you are criticizing how we depend on the profit motive to do a lot of this clinical research i agree with you 100%, so i certainly don't like big pharma which i assume is what you are criticizing.
darwin at least was a taxonomist, he was highly trained at what he was doing. it was his life. that's why i call what your"re doing entertainment.

Entrainment, optimism, big pharma, big science, sample sizes, etc.... It just doesn't matter. When johnt’s survey is completed and data is available to anyone who may come across it, it might just open eyes. It may jog a memory, a thought, an idea. It may be a scientist like a Pasteur or Fleming that happens across it. Just because johnt may not have hypothesis does not mean the information is less valuable. It only means the data has been collected and made available. Even if they have to redo the survey or conduct a trial to verify the data, just having started this process and giving an idea to someone is worth the effort of taking 60 seconds out of your busy life and taking the surevy.

The handedness study has now received 76 replies from IPD. See attachment for graphic, and see the website for the raw data and a statistical summary.

We are now at the stage, where in addition to more replies, we could do with more analyses: Do you see a pattern in the data? Can you justify it statistically?

Mainly thanks to Conductor71's marketing skills, this PwP centred research approach looks likely to take off. Consequently, I've decided to move from the free web host to a paid for one. This, amongst other advantages, has allowed a shorter, clearer domain name:

www.parkinsonsmeasurement.org

All the data collected has been moved there. So, if you've already entered data, there is nothing for you to do. If you're still to enter data, please do so at the new site.


John

Attached Images

handednesstableau.png (13.6 KB, 63 views)

If you've not already completed it, the online handedness survey is still open.

It takes only a minute to complete.

Survey: http://www.parkinsonsmeasurement.org...ess/survey.htm

Raw results: http://www.parkinsonsmeasurement.org...ss/results.xml

Statistical summary: http://www.parkinsonsmeasurement.org...ss/summary.htm

91 people with IPD have provided data which includes -
left hand dominant, left hand first symptoms: 6
left hand dominant, right hand first symptoms: 4
right hand dominant, left hand first symptoms: 36
right hand dominant, right hand first symptoms: 45

The difference for men and woman in the time between first presenting with PD symptoms and the IPD diagnosis being given has already been reported. See:
http://neurotalk.psychcentral.com/thread163231.html

Have a look at the statistical summary page. Can you see anything else interesting?

John