[rose of his heart]

WIRED's executive editor Thomas Goetz (whom has authored "The Decision Tree: Taking Control of Your Health in the New Era of Personalized Medicine.") published a lengthy profile of Sergey Brin in the journal WIRED yesterday. Brin, the Google cofounder, has funded PD research with 23andMe, MJ Fox Foundation and The Parkinson's Institute.

Among many interesting scientific, technological and biographical tidbits, yesterday's article includes a chart comparing the traditional research model with the new "google research" model. Below is an excerpt; the full article may be found at: http://www.wired.com/magazine/2010/0...s_search/all/1

Traditional Model
1. Hypothesis: An early study suggests that patients with Gaucher’s disease (caused by a mutation to the GBA gene) might be at increased risk of Parkinson’s.
2. Studies: Researchers conduct further studies, with varying statistical significance.
3. Data aggregation: Sixteen centers pool information on more than 5,500 Parkinson’s patients.
4. Analysis: A statistician crunches the numbers.
5. Writing: A paper is drafted and approved by 64 authors.
6. Submission: The paper is submitted to The New England Journal of Medicine. Peer review ensues.
7. Acceptance: NEJM accepts the paper.
8. Publication: The paper notes that people with Parkinson’s are 5.4 times more likely to carry the GBA mutation.
Total time elapsed: 6 years

Parkinson’s Genetics initiative
1. Tool Construction: Survey designers build the questionnaire that patients will use to report symptoms.
2. Recruitment: The community is announced, with a goal of recruiting 10,000 subjects with Parkinson’s.
3. Data aggregation: Community members get their DNA analyzed. They also fill out surveys.
4. Analysis: Reacting to the NEJM paper, 23andMe researchers run a database query based on 3,200 subjects. The results are returned in 20 minutes.
5. Presentation: The results are reported at a Royal Society of Medicine meeting in London: People with GBA are 5 times more likely to have Parkinson’s, which is squarely in line with the NEJM paper. The finding will possibly be published at a later date.
Total time elapsed: 8 months

[Conductor71]

Rose,

I am so pleased to see you posting again. I think Debi Brooks shared this article a few weeks ago but not within this particular framework or context, so I am glad you decided to sum up what is key.

It is particularly troublesome to me that anyone at all involved in PD research have the audacity or chutzpah to question 23andMe at all. I just ran across this morsel at the Movement Disorder Society's Continuing Education site. There they casually disclose that many clinical trials have been skewed because participants really didn't have PD after all! Yes, turns out there is a little phenomenon known as SWEDDS (Subjects Without Evidence of Dopaminergic Deficit). These people were not screened before major trials and then because of their unusually slow rate of clinical "progression" set a very high bar for all else involved.

How can 23andMe do any worse? At least we are aware up front of the shortcomings involved in their approach. How long will money continue to be wasted in other research protocols?

Laura