(found the following in my email alerts. Have no idea the validity, though sounds intriguing. Thus, will share the contact info. The poster is from the UK. madelyn)

Team to study the epidemiology of Parkinson's Disease.
Johnt

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12/11/2012
Most people with Parkinson's don't know what caused it. There are likely to be both genetic and environmental factors.

There's a huge amount of data that's available at this and other sites that needs mining, which might lead us to a better understanding of the disease's aetiology.

I would like to hear from anyone who is interested in forming a loose-knit group to use open data to help find the cause of Parkinson's Disease.

Please contact me via:

http://www.parkinsonsmeasurement.org

John

http://data.gov.uk/forum/team-buildi...insons-disease

Thanks for the mention Madelyn. It's me who is building the team. The speed with which the message has got around just goes to show the power of the internet.

The UK government is aware of the latent power of raw data. It has an Open Data initiative to get as much as possible into the public domain. Details can be found on their web site:

http://data.gov.uk

An example of the data that can be accessed is a database containing for each of around 10,000 NHS GP practices in England the number of prescriptions they write for each drug for each month.

But this is just the tip of the iceberg: the real power comes from connecting data from one database with data from another database. For instance, as I've posted here previously, I've combined the prescription data with location data to construct maps of the inferred prevalence of Parkinson's across England. For an update on my post see:

http://www.parkinsonsmeasurement.org...ceEngland1.htm

The government site has a forum, part of which is devoted to building teams to tackle particular problems. (Something worth considering for our forum?) The volume of the data is far too much for one person to data mine exhaustively. Hence, the post that Madelyn reports.

Moving forward, as I see it, we have a huge problem, Parkinson's, but we also have:
- a huge amount of data which, I believe, contains the answer as to what causes Parkinson's;
- a group of people with a huge range of skills;
- a huge amount of computer power, which sits idle most of the time.

Put all these things together properly and we can make a huge difference.

I think we can best work together while working apart, by sharing our time, our tools, our methods, our data and our results. That's what this forum does better than any other I've found. Can we ramp this up to account for the huge opportunity that this vast amount of data gives us?

As a start, please let me make a proposal. In the next 5 DAYS (that's 5 days, NOT the usual 5 years) we each find the correlation of one thing with Parkinson's. And let's set a team target of 42 correlations.

The important thing is to get started, so don't, at this stage, worry about the mathematical preciseness of correlation - though we'll need to treat it rigorously later. Don't worry about whether the correlation is positive or negative or zero, all results are interesting. And, although correlation is not the same as causality, don't worry about that for now; we'll deal with that later.

How to get started? Go with what you're good at and use what data you have access to. Use literature surveys, excel analysis, comparisons of geographical distributions. As for data, there's the UK government site already mentioned, in the US there's wonder.cdc.gov, there's the MJFF backed Parkinson's Progression Marker's Initiative, www.ppmi-info.org etc..

Think inside the box. Knowing what's known is worth knowing. Parkinson's and gender, and age, and smoking, and milk ...

Think against the box. Does the data support what's "known"?

Think outside the box: if it was obvious, someone would have found it by now.

If you're stumped for what to do next:
- find the prevalence map of Parkinson's in the US, reported by Willis et al. in:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2865395/
- choose something that comes to mind, anything that may vary across the US, and google
x distribution US map
- choose the Images filter (not Maps, maps will be included in the images.)
- find maps that look interesting, compare these with Willis's results.
- report back.

Remember, 42 by Thursday!

John

i'll be blunt. this is not for amateurs. this is difficult work even for professional, degreed statisticians since you are looking for very subtle affects.

secondly, garbage in, garbage out. if a database was full of useful info that might lend itself to statistical analysis, it's been examined. if a database hasn't been examined, it's very likely it isn't useful.

thirdly, you are playing with fire. if you report a correlation and it proves to be false, think of the panic you would create.

that's why highly trained professionals do this work because if done wrong it can have very bad consequences.

with new biochemical biomarkers being identified and sites outside the brain such as the gut, olafactory cells, saliva glands, etc. having lewy bodies, with changes in sleep patterns, constipation, smell possibly being pre-motor indicators, with being able to create neurons from skin cells from pd'ers upon which you can cheaply and quickly test chemicals and other stresses, with ongoing studies which are following thousands of patients around the U.S. at risk / not at risk for PD for the first signs of pd, i think population studies aren't going to tell us much more. researchers are thinking some cases of pd are started in the womb by predisposing one to environmental stresses. if that's the case, then what causes pd in one patient might be totally different than in another if dozens of genes are involved and are affected by the environment in the womb or early childhood.

then with DNA analysis becoming very cheap, it will be possible to go beyond just identifying a few major and rare genotypes that give you a significant probability of getting pd to identifying more subtle genotypes so you can find out in your 20's what your chances of getting pd are assuming the causes are so widespread in the environment we can't easily avoid them. that is the goal of 23andme and other companies and to link their research in identifying relevant genotypes to drug development. and as far as reporting your results, consider the implications of genetic testing for just one person. 23andme reported to me that i had an allele for the BRIC1 gene which slightly increased my chances of getting breast and prostrate cancer since i'm a male. i told my sisters about this. one sister new a lot about this gene and was carefully getting exams. the other sister knew very little and totally freaked out. your're playing with fire if your're recruiting amateurs to examine databases. if you are asking people to report small clusters which might not be picked up in a big database, then go for it. the irony is i would think asking members of this board to participate in a clinical trial like the following would be far more useful than to as them to be amateur detectives.
https://foxtrialfinder.michaeljfox.org/trial/2708/

not only do you have to be a statistician to know if a database is normally sampled, i.e., does it represent a normal distribution, but is the data collected in the time/geographic window when the "affect" occurred? pd likely started in our 20's, yet most data you are examining is from data collected by people over 50. how do you "lock in" what event might have caused pd if it is incredibly subtle?
as far as smoking, tobacco has been shown to be neuroprotective as has tea and coffee.

i suggest you watch this webcast which does a good job at explaining pd starts way before motor systems occur and what is being done to find causes.
http://www.theparkinsonsgroup.com/webcasts.asp
the last 2 are the best but they are all interesting.

imho, bottom line, if you don't have experience in doing these types of analyses AND DEFENDING the results as to the epidemiology , it's a waste of time. if you just want to report interesting correlations/statistics as to drugs, costs, trends - is pd increasing/decreasing somewhere, etc. that would be very useful.

http://www.parkinsons.org.uk/pdf/Par...evalenceUK.pdf
since most people who have pd will get medical care, this seems to be a relevant database since they will be in the database, it only counts pd'ers and there is likely very little
duplication. not sure if anyone has studied it for epidemiology.

the prescription database you used imho isn't very useful for epidemiology with the simple caveat that a lot of the dopamine agonists are used for restless leg syndrome and essential tremor. plus with pd, patients often seek out specialists far away or if they move away will continue to have their rx's written by the same doctor even years into the future since you don't always have to go in for a yearly exam if nothing has really changed. you really also have to study the british health care system to figure out their RX filling system to draw any conclusions even about prescribing habits. one doctor moving into or out of an area could make a big difference plus the introduction of a new drug, some doctors might embrace it more quickly than others. my point is statistics don't mean much unless you understand the system you are sampling.

Perhaps the correlations need to be made with a backup reference, for instance I have Pernicious Anemia, which is a kind of vitamin B12 deficiency, I was asked by my doctor, as he could see no lifestyle problems to find out whether there was a correlation between PD and PA and the medications I was taking. A quick search gave me a study from the UNI of Athens, Greece, that confirmed that long term levodopa use in PD patient could indded result in B12 and Folate deficiencies. Further to this someone sent me a link to an advisory from the PD Dietician Katherine Holden which indicated that there was indeed a connection.

I for one would be interested to know how many other people have a similar deficiency, and whether it links to the type of PD I have.

This does not mean that the information would panic people, but perhaps if they felt it needed looking at they would have some grounds for asking that the relevant testing be done. Particularly important as PA also has its own set of neurological signs that could possibly be muddying the water re: PD.

One possible correlation....... I will add the citations later.

Just to also say there is virtually no epidemiology, so even something simple starts to fill in some of the dots. At the moment there is just incidence, but this is patchy. Patients are in the unique position of knowing exactly where they are, what they are taking etc.

What is the difference between studying epidemiology and studying biomarkers?
Ann

just from memory, the chances of pd are statistically greater if you are a welder, a teacher, live on a farm. been knocked out, had the flu - 1918 flu epidemic - and less if you drink coffee, green tea or smoke tobacco.

the fact that there are so few clusters would indicate that there is likely no smoking gun that statistics is going to find, it's likely the affect of overall pollution.

there have been clusters, remember that a lot of people working with MJF on some tv show in BC got pd? i don't think anything was tracked down.

i'm all for sharing experiences, opinions, links, participating in data collecting surveys, participating in clinical trials, making govt/rersearchers/business pay attention to our needs. i only disagree with amateurs trying to do statistics on epidemiology.
i'm all for anyone using reports or statistical analysis to report trends such as a pd increase/decrease in an area or age group, spending, patient visits, drug use, etc.

Ann,

As I understand the terms, epidemiology uses both intrinsic data (from the body, biomarkers) and extrinsic data (from the environment, lifestyle etc.)

For the intrinsic/extrinsic split see:
http://www.scientificspine.com/spine...demiology.html

John

soccertese

You write:

"i'll be blunt. this is not for amateurs. this is difficult work even for professional, degreed statisticians since you are looking for very subtle affects."

Do not underestimate the skills of PwP. You do not stop being a professional at the moment of your diagnosis with Parkinson's. You don't suddenly lose the skills built up over decades of education and work. You do not lose the ability to learn new material.

Do not underestimate what can be achieved by a group of motivated people working together.

On what evidence do you base the assertion:
"if a database was full of useful info that might lend itself to statistical analysis, it's been examined. if a database hasn't been examined, it's very likely it isn't useful."

I don't see armies of statisticians mining the data for the benefit of existing PwP. I don't see a bottomless pit of research funding going into the epidemiology of Parkinson's. If we want more research, we'll have to do it ourselves.

Finally, I don't see the job of a PwP as being just to go to the medics and take the drugs and, occassionaly, be experimented on in a trial. It's our health, our life. Make use of the medics, yes. Make use of the researchers, yes. But, it's too important just to leave everything to them.

I thank lindylanka for kicking-off the proceedings with a correlation between Parkinson's and Pernicious Anemia.

1 down. 41 to go!

John