Our Parkinson’s research community got some welcome attention from NPR on Monday just as we are on the cusp of reaching our goal of enrolling 10,000 patients.
The piece featured Emily Drabant, PhD, 23andMe’s research manager for our Parkinson’s community, and focused on our model of engaging patients as partners in research using online tools and social networking. While this isn’t new for us, some are only now warming to the idea and its potential.
In the NPR piece, Hank Greeley, a Stanford Law School professor, and sometimes critic of direct to consumer genetics testing companies like 23andMe, conceded that there’s power in the ability to tap into online tools for recruitment.
“[23andMe] may in theory be able to involve 10,000 people with Parkinson’s disease, and do it cheaply and easily,” Greely told NPR. “Now that’s something that academic researchers would love to be able to do.”
Participate in research!
Getting to 10,000 is important because as any researcher will tell you, there is strength in numbers. Drawing from such a large pool of patients gives power to the research.
Having what is already the world’s largest Parkinson’s community for genetic research helped us discover new genetic variants associated with Parkinson’s – including a potentially protective factor.
Parkinson’s is an extremely complex disease. Uncovering more about the role genetics plays in Parkinson’s could provide valuable information about the development of the disease and how to combat it. Last year 23andMe found two new genetic associations with Parkinson’s and more recently found a genetic variant in the gene SGK1 that is potentially protective against the disease. With the help of the Michael J. Fox Foundation, the Scripps Research Institute is following up the SGK1 discovery with lab studies that we hope will lead to new treatments.
Check out some of our other recent posts on Parkinson’s:
– Why Not Participate? One Patient’s Perspective