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-   -   Google Co-Founder Backs Vast Parkinson’s Study (https://www.neurotalk.org/parkinson-s-disease/80987-google-co-founder-vast-parkinson-study.html)

lou_lou 03-12-2009 06:11 AM

Google Co-Founder Backs Vast Parkinson’s Study
 
March 12, 2009
Google Co-Founder Backs Vast Parkinson’s Study
By ANDREW POLLACK
Sergey Brin, the billionaire co-founder of Google, says he plans to contribute money and his DNA to a large study intended to reveal the genetic underpinnings of Parkinson’s disease.

The study, to be announced Thursday, will be conducted by 23andMe, a company co-founded and co-managed by Mr. Brin’s wife, Anne Wojcicki. The company offers a personal genomics service, in which it scans the DNA submitted by its customers and provides information on their health risks, ancestry and other traits.

Now it hopes to use its service and its growing database of consumer DNA to conduct medical research. The company hopes to recruit 10,000 people with Parkinson’s disease for the study.

Mr. Brin, 35, revealed last September that he had a genetic mutation that sharply raised his risk for developing Parkinson’s. His mother, Eugenia Brin, already has the disease.
skipping down -

Mr. Brin, who will pay the bulk of the study’s costs, declined to say what that cost would be. The people with Parkinson’s disease who enter the study would receive the same analysis of their DNA as other 23andMe customers, but would pay only $25 instead of the usual $399.

Executives at 23andMe say they hope to do similar studies for other diseases. “There’s a huge opportunity for us if we can make research more efficient,” Ms. Wojcicki said.

Such studies might also become a source of revenue for the company, if, say, drug companies, were to pay for 23andMe to mine its database or to analyze the DNA of patients in clinical trials.

much more to read
link
http://www.nytimes.com/2009/03/12/bu...1&ref=business

Debi Brooks 03-12-2009 07:24 AM

Information about the 23andMe PD research community
 
This morning MJFF, via Fox Flash email, is reaching out to people in our database (donors and non-donors) who have indicated to us that they have Parkinson’s disease with notification of a special opportunity (which includes a unique discount and a buddy code). Some of you may be interested as well.

The creation of a web-based research community has been conceived and led by 23andMe, a Web-based personal genetics service that processes individuals’ DNA and then offers information about ancestry, inherited traits and disease risk on a secure Web site using interactive tools. The offer to be part of the community is being extended to 10,000 PD patients (through MJFF and the Parkinson’s Institute). This endeavor requires providing saliva for a DNA analysis and participating in subsequent web-based surveys.

MJFF is cognizant that personal genetic testing — particularly for a disease like PD, where there is no meaningful therapeutic response to confirming an individual’s genetic risk factors — is not without controversy among researchers and clinicians. We are also aware that the utility of a Web-based community model for research is in its infancy. But ultimately, our belief is that the opportunities presented by both, particularly when undertaken with strong partners, are too great to ignore. We are enthusiastic about encouraging clinical research participation by large numbers of individuals who might not otherwise take part in research for Parkinson’s disease.

Many of you have commented how you’d like to be more involved in clinical studies…this is an opportunity to participate without leaving your home. If this process proves successful, we may be able to dramatically increase the amount and nature of data we collect from PD patients and do it in a speedy and cost efficient manner. Such improvements could be transformative.

If you have Parkinson’s disease, did not receive our email, and are interested in possibly getting involved you can do so in two ways:

1. you can either get a buddy code from someone who received unique codes from us or

2. go to our web site and signing up (you are not guaranteed a discount code in this scenario but you will be put on our waiting list to possibly receive one--23andMe will allocate codes based on response rates).
http://www.michaeljfox.org/newsEvent...cle.cfm?ID=303

There is much more information about this effort on our Website…Take a look.

Debi

paula_w 03-12-2009 07:59 AM

Thanks Debi, this sounds like something that would be right up our alley. Please check in for the questions we are bound to have..I'm off to read it.

paula


Quote:

Originally Posted by Debi Brooks (Post 479770)
This morning MJFF, via Fox Flash email, is reaching out to people in our database (donors and non-donors) who have indicated to us that they have Parkinson’s disease with notification of a special opportunity (which includes a unique discount and a buddy code). Some of you may be interested as well.

The creation of a web-based research community has been conceived and led by 23andMe, a Web-based personal genetics service that processes individuals’ DNA and then offers information about ancestry, inherited traits and disease risk on a secure Web site using interactive tools. The offer to be part of the community is being extended to 10,000 PD patients (through MJFF and the Parkinson’s Institute). This endeavor requires providing saliva for a DNA analysis and participating in subsequent web-based surveys.

MJFF is cognizant that personal genetic testing — particularly for a disease like PD, where there is no meaningful therapeutic response to confirming an individual’s genetic risk factors — is not without controversy among researchers and clinicians. We are also aware that the utility of a Web-based community model for research is in its infancy. But ultimately, our belief is that the opportunities presented by both, particularly when undertaken with strong partners, are too great to ignore. We are enthusiastic about encouraging clinical research participation by large numbers of individuals who might not otherwise take part in research for Parkinson’s disease.

Many of you have commented how you’d like to be more involved in clinical studies…this is an opportunity to participate without leaving your home. If this process proves successful, we may be able to dramatically increase the amount and nature of data we collect from PD patients and do it in a speedy and cost efficient manner. Such improvements could be transformative.

If you have Parkinson’s disease, did not receive our email, and are interested in possibly getting involved you can do so in two ways:

1. you can either get a buddy code from someone who received unique codes from us or

2. go to our web site and signing up (you are not guaranteed a discount code in this scenario but you will be put on our waiting list to possibly receive one--23andMe will allocate codes based on response rates).
http://www.michaeljfox.org/newsEvent...cle.cfm?ID=303

There is much more information about this effort on our Website…Take a look.

Debi


jeanb 03-12-2009 08:23 AM

Thank you 23andme
 
I've signed up - and after I get home from PAN I'll do the test and send it in!

Am also forwarding the buddy info to a friend in Tucson.

:hug:

bluedahlia 03-12-2009 10:35 AM

Count me in. Just signed up.

rd42 03-12-2009 01:11 PM

Me three! :) Not only do I have PD I have DNA too! :D

girija 03-12-2009 05:56 PM

me too !
girija

Curious 03-12-2009 06:03 PM

Would someone like to post about this on Community Forum Feedback?

Some of our members ( and staff ) have family members or friends with PD. They don't always read this forum.

Spread the word. :)


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