A member of PLM posted this data. We I inquired about posting it in another board (other than PLM) he state that the data was public domain, so here it is.

To date, they have compiled some interesting facts about the PD community and its members:

• We are now 3,000 members strong! We are still targeting 10,000 members, so please spread the word to others you know who have been diagnosed with PD.
• Your average current age: 62.5 years old
• Your average age of onset: 56.4 years old - about a decade earlier than the general Parkinson's population
• Onset was at or before 40 for 7% of you - comparable to the general Parkinson's population
• 60% of you are male - men generally have a higher risk for Parkinson's
• 2.5% of you have the LRRK2 mutation G2019S, which confers a substantially increased risk of Parkinson's.
• The vast majority of you don't have any known genetic factors associated with Parkinson's. This is why genetic research is so crucial for this disease. You can help by continuing to fill out surveys so that we can better understand PD.
• Over 60% of you have taken the Parkinson's background survey. Thanks to those who have taken this survey. If you haven't, please do so -- it is essential to our research efforts.
• Over 30% of you have taken five or more surveys - way to go!

I am a big fan of the 23andMe initiative, and was one of the early participants. The data is fascinating, though for the first few weeks I felt a bit like Narcissus staring into a bottomless pond (lol). Yet I am concerned that the quote above may be slightly, unintentionally misleading.

The test identifies, among other things, the LRRK2 mutation associated with specific populations of late onset PWP. It does not assess the Parkin or Pink mutations associated with early onset PD. (I verified this with 23andMe.) Additionally, as the quote implies, there are likely other mutations that remain unidentified which are somehow linked to PD, as well as SNIPS.

This is in no way a criticism of 23andMe's invaluable service. It's just a reminder to participants that if your results show no mutation of LRRK2 that does not necessarily mean there is not a genetic component to your PD.

Your doctor may agree to order additional testing from a private lab if you are interested, and some insurance companies will pay for it...mine did. But beware of the billing tricks labs sometimes play with consumers (I'll save that shocking tale for another day!). These tests run in the thousands and, as of yet, have no or little practical application.

My newest silver lining of PD: I finally understand why my eyes are blue!

Rose

Thank you for that clarification. I was a little disappointed to find that they only tested for one marker as it is touted as a Parkinson's Research tool. Does anyone know why, other than cost, 23andme does not offer the option of testing the other mutations (I think there are 13 at this point) for an extra charge? Looking at their data, it looks as if their is a much larger amount of data for late onset PD. This may help us all at some point, but I really was hoping they would do a little more differential testing for us YO participants. Nonetheless, I'll be interested to see how the research unfolds.

Rose, I really enjoy your posts both here and at YOPA.

Best,

Laura

I participated in 23andM3 research project too, mostly because my data point would add to PD knowledge, not for immediate personal benefit. I was also aware of the fact that they are doing just LRRK mutation analysis. I assumed that it is because the project is Google funded and LRRK mutations in PD are of interest to Google founder. Yes, it would have been a far better study had they included other genes too. May be they will at a later date.
Thanks for pointing out that absence of a genetic marker does not mean anything. Sadly, finding a mutation doesnot translate into a cure either. At this point, this project is mostly for science and data collection. It will help future generations, I hope.
girija

Girija...you wound me! I too participated to advance scientific knowledge and help future generations. To be honest, I also hoped to gain additional insight into how the heck I ended up on this board.

Another immediate benefit I had initially selfishly hoped for (before learning that there are likely more markers we are unaware of than the ones we know) was peace of mind. My maternal grandmother had early onset PD and I suppose I was looking for a reason not to be terrified that my two boys will develop it as well.

I worked in fundraising long enough to know that most people's motivations to contribute to anything are multi-layered. The closest to an exception I have found are the Anonymous Altruists. The rest of us fall somewhat short of that. In the end, actions count more than motivation. The data will be useful either way.

Selfish Rose ;>)

Hi Rose,
I didnt realize how my post sounded till I read your post! That post was written after a long philosophical discussion with friends who are visiting us! After a glass of wine, chatting with good friends who have known us for 20 years and share similar ups and downs in life and remembering how we all wanted to do science for the sake of science.........you can guess my frame of mind!!

The other selfish part of me (I do have one!!) was relieved to see that there are no mutations in my LRRK. Just as you said I was concerned about my kid too.

There! now you know!

girija

The reason that LRRK2 is the only gene mutation on the current chip is because the service is only able to identify common mutations for common diseases...so, by their rare nature, other genes won't likely be read/detected at the current chip strength. As it is, LRRK2 is only expected to be found in 1 to 3% of sporadic PD cases (higher percentages in some ethnic populations) --making it the mutation that, thus far, explains the "most" about genetic etiology of PD. This is technology driven not, driven by a limited interest in LRRK2 only thing.

As technology improves and the cost of computing comes down over the coming years, then such tests will likely be able to report on more rare mutations (not just in PD but in across all diseases). Right now this limitation is related to the difference between a SNP analysis and a full genome-wide assessment.

Debi

Debi,
Thanks for clarifying the reason for LRRK2 detection. My post is not appropriate for the general forum and I am trying to edit it. A good lesson for me to learn, when not to post and to re-read what I wrote!!!

Girija

This is what it says next to my little elevated risk for PD item - it appears to be genetic:

"Since the G6PD gene is located on the X chromosome,...."

has anyone ever heard of this? apparently it is a good thing i have never had fava beans, as they have a tendency to burst the red blood cells of people with this deficiency.

boann

Girija, after a period of time the "edit" button goes away and you have to contact a moderator to fix the post or to delete the post.

Carolyn