John,

This is great! I feel like a heel for not contributing to it sooner; I honestly do not recall noting the change between this and the earlier more involved study you discussed.

Perhaps bumping the topic once every few months may help. Also, if you would like, I'd be happy to promote it in in other PWP social networks; in fact, there are at least 4 sites that come to mind right away. Of course, we'll likely get 1-5 respondents at each, but hey it's not too off the mark for participation in our clinical trials, so we're doing okay.

I was thinking in terms of even doing some straight demographics and patient history surveys. I would love to generate some more data from that US map but wondered if the EEC provides similar mapped data on PD so we could make this global. Or is this entirely too ambitious?

Thanks again for taking charge!

Laura

Laura,

Thanks for your offer to promote the survey. I'll be grateful.The more people we have, the more chance of finding something significant. People in this forum know the context so I've pointed you directly at the survey. People outside will not have this background. So, I suggest you point them at the home page of my web site:
http://www.parkinsonsmeasurement.webatu.com
This gives the required context.(It's still early days for the site, so there's little in it other than the survey and the online tools I've written.) It is easy to navigate to the survey from there.

Your idea of looking at demographics is good. I'll post on this later.

We now have 27 replies to the survey.

John

JOHN,
i commend you for you efforts but many demographic statistical studies have been done and many countries like sweden and finland have access to almost 100% of their population's medical records since birth. my point is you can't verify any of your data since it's entered anonymously, it will likely be highly subjective and your sample sizes will be too small to show any significant differences.

now, if you want to organize a small trial testing some of the things people say help them and record the results, that would be interesting but obviously very difficult and has some risk.

I just took the survey. I am apparently your first right-handed male with symptoms on the left side. I would have thought it to be common.

We now have 38 replies. (See attachment for an up to date graphic.)

My thanks go to all the new respondants and to Conductor71 for promoting the survey - this has led to many more replies.

Soccertese,

You write:
"my point is you can't verify any of your data since it's entered anonymously, it will likely be highly subjective and your sample sizes will be too small to show any significant differences"

(I want to keep the focus of this thread on handedness, so I'll reply to your other points in the "What can we do next?" thread.)

You're right about the inability to verify the data. The design decision I had to make was: do we use a more rigourous approach, which would probably mean that far fewer people would reply, or do we go for a more open approach which would encouage more replies? In this case, I went openness because I think the data is likely to be OK. I would, however, be more worried if the survey involved commercial interests.

In this case, I don't agree with you that the data is "highly subjective". A possible exception is the accuracy of the diagnosis date. My concern here is not that PwP get the date wrong (it's the sort of thing you don't forget) but, rather, the timing of the doctor's decision to label the condition "PD" is flexible.

Regarding sample sizes, the sample is already big enough to make some weak statistically significant statements. However, more data would be welcome, especially to overcome the a posterori effect discussed in an earlier post.

GerryW,
On the latest figures: of the right handed men there are 11 with first symptoms on the right and only you with first symptoms on the left. Interestingly, your diagnosis was, as far as this survey is concerned, very late. See attachment. So, a claim that the effect is limited to early onset men would stand. We need more data.

John

Attached Images

handednesstableau.png (7.0 KB, 75 views)

in this "study", what exactly is your hypothesis? if it's just an interesting endeavor that's one thing but what do you plan to do with the data when done? we pretty much know men get pd more often, it occurs after 40, and it usually starts on one side.

if your hypothesis is that it starts on the right more often, i imagine you could get a sample size large enough to come to some conclusion but not sure if one could assume you are sampling a normal distribution, your're really not taking a random sample, just very motivated pd'ers.

there's science and there's entertainment.

Soccertese,

I know that you realize that the criticisms you level at John't endeavors to collect data apply to most PD research in general, so with all due respect what is the issue. I do not think that we plan to publish the results in a peer reviewed scientific journal although this is what happens everyday with what passes as reliable and valid data in the research community.

As far as the scientific method goes...it seems to be resulting in scientists reaching a lot of similar or like conclusions but when is the last time a tested proven hypothesis made a difference in your life or anyone else who currently has PD. How many more articles do we really need to know that agonists can cause aberrant behavior? Do I need to hear one more time how my smell is supposed to be impaired?

The problem with the scientific method is that it is excruciatingly slow; has narrow foci, and largely over looks the patient. We hold answers but who is asking? Sergey Brin has made public the deficits in PD research and calls progress "glacial". I can't speak for John, but I support his endeavors because collecting this data is reason enough; there is no need to "prove" anything or hypothesize. That is being taken care of already.

This is about trying to generate data and analyze looking for patterns. Sergey Brin calls the results of what we are doing "noisy data" which most scientists hate, but it is the warm, fuzzy, lifestyle kind of data that show patterns and correlations. These things cannot be discovered in a test tube or in a lone study with 20 PwP. In essence, he started the 23andme PD cohort to collect random data; he has already shown that in breaking the rules you can reach the same conclusions as our elite scientists but in a fraction of the time (6 years for traditional approach and 8 months for Brin's algorithm). Given the differences, I'll sign on with the research misfits. At least there I can feel a little less helpless and frustrated. Maybe that is reason enough for most of us.

Laura

conductor, please don't put words in my mouth, i am not criticising pd research or medical research, i am just stating an opinion about john's work and suggesting caution. imho it's not research, it's entertainment. the early scientists like pasteur, fleming sure didn"t run huge clinical trials, they couldn't. countries less wealthy than the u.s. don't have the huge university/medical institutions where publishing/getting funding is at times more important than bringing a treatment to clinical trials, i remember watching a congressional hearing on adult stem cells, senator brownback was chairing it, and they had a researcher from portugal testify who had implanted nasal stem cells into the spinal cord of 2 paraplegics, who actually testified, and was getting some results. at the same hearing, they had a professor from the university of mississippi doing similar research who was still working with mice. the portugese researcher had no funds, had to use his own money and experimented on guinea pigs initially, so yes, i fully understand a lot of research is "make work". i did a completely useless research project in grad school, measuring phytic acid in oats. but i did get valuable experience in designing, conducting an experiment and getting results published, so a lot of these research projects have some value if they train grad students. not everyone grad student can do nobel prize work.

darwin's contributions to science were mostly from observation but he at least had theories he was trying to prove - he actually did do some chemistry experiments, he discovered plants produce a "hormone" that encourages growth but is inactivated by light.

but with the failure of so many phase2 trials lately when phase1 results were so good tells me that we need more science, more understanding of how neurons work, not more "fuzzy" science.

now, even 1 person trying grapefruit juice is research imho and i think the that type of trial/error is wonderful. if it only helps one person that's fine as long as there are no potential side affects that might hurt someone.

23ANDME is doing DNA analysis which i assume will lead to much better success in early diagnosis. considering that it cost 100's of millions to analyze the complete human genome i wouldn't call what brin is funding as "fuzzy", it's as technical as it gets.
having had a brother die of lung cancer recently, i appreciate the potential of understanding the genes involved with starting/stopping disease as much as anyone.

my point if some stranger on this board gets people involved in some "research", then we have every right to know what the purpose is and what will be done with the data, regardless of how harmless it may seem. were're being asked to link to an unknown website, open tabs, etc. i guess i'm just a little more cautious than you are.

now i'm always interested in trying something suggested on this website, god knows i;ve tried everything from chelation to I.V. glutathione to muciana. i appreciate when someone suggests something. but i see absolutely no value in what john is doing except as entertainment. so we disagree again. what's that, about 10 times?

I am thinking we agree on more than we disagree but things get lost in translation, not to mention that when I find myself dozing I may not be writing with as much clarity as I could be. I just wanted to clear up a few things.

The Brin quote on "noisy data" those are his words, not mine. (IMHO) John is actually doing what Brin is espousing albeit on a much smaller scale. There is a fantastic interview in Wired with Brin; I think you may like it. Brin's idea behind 23andme is that the hypothesis comes later. I think we are talking different research areas. With epidemiology I thought goal was to collect data and analyze, then look to prove possibilities. Obviously, molecular biology and drug trials are different. Regardless of type of study; bonafide research in PD is also hindered by low sample sizes and selection bias, so I don't know we can single out John on that.


I think Sergey Brin is one of our unsung heroes. He is the first to come forward and actually start putting the pieces together by looking at us, our environment, and linking to our genome. He is actually diving in and attempting to put together puzzle pieces while the rest of the non Nobel caliber researchers are earning their bread and butter by adding more pieces. Not criticizing but eventually someone has to stop and notice that one of the key missing puzzle pieces is the patient. Fruit flies and rats only tell you so much.

I think it insulting in light of this to call John's work "entertainment". BTW, he has updated the site and has a "philosophy" that btw just received a thumbs up from a well connected doctor who took the survey from my Facebook link. She knows that there is more to cracking the code than registering at MJFF Trial Finder. You may regard this as frivolous but collecting random bits of seemingly pointless facts may some day elucidate why in twins, one may develop PD while the sibling is spared; genetic studies haven't yet explained this. It may also eventually offer some explanation as to the incidence of married couples (conjugal parkinsonism) who both develop PD. Studies again mention chronic exposure to toxins but this we already know...more likely it may be something inside the home.

Given that researchers are still debating whether our "gold standard" drug is toxic, I don't see any harm in answering a survey or minding my p's and q's on a keyboard as harmful. I expect that people who visit here and link to the databank are intelligent and reasonable enough to ask their doctors before they add on herbal supplements, etc.

conductor,'
they're still arguing about aspirin. and about every drug that affects the brain.
because it's the brain!!

anyway, that was my last post addressed to you, were're ships passing in the night.
i was addressing only what john was doing, not what anyone else is doing. you imho blew it way out of proportion. even criticizing MJFF? how did they get into this?


bye