That knowledge has lead the 35-year-old Brin to want to make a difference in the fight of Parkinson’s disease. He’s putting his money on the table to fund the study, $4 million. The Australian News reports:
“We can make significant progress in understanding Parkinson’s disease if individuals join together and contribute their personal experiences to scientific research,” Mr Brin said.
“Individually, our genes and experiences are lost in a sea of statistical noise. But, taken together they become a high-power lens on our inner workings.”
On Thursday the Sunnyvale-based Parkinson’s Institute and the Michael J. Fox announced that Brin was funding a special study to help in the search of the gene mutations with Parkinson’s disease.
More than 1.5 million Americans live with Parkinson’s, an incurable brain disease. It causes uncontrollable shaking. Generally those who suffer from the disease have their first symptoms after the age of 50.
Brin is funding gene scans for 10,000 Parkinson’s patients at 23andMe Inc. The genetic testing lab was co-founded by Brin’s wife Anne Wojcicki. 23andMe has a simple mission, to be the world’s trusted source of personal genetic information.
That funding will enable the lab to study the 10,000 people that is hoped to take part in the research study. The Michael J Fox Foundation is working to recruit the test subjects. Once the 10,000 are found they will be able to have their DNA analyzed and then compared to healthy controls.
The Michael J. Fox Foundation reports:
“Exploring the potential of a Web-based approach to patient engagement for research purposes is well-aligned with our Foundation’s mission,” said Katie Hood, CEO of The Michael J. Fox Foundation.
Both the Foundation and 23andMe are undertaking a research project that could in time be the start of several types of research bases. All of this is coming from the private sector instead of the general academic world of research.
“We just felt the research was advancing too slowly and in reality, to make significant discoveries in health care, it’s a data problem and we don’t have enough data,” says Anne Wojcicki, from 23andMe.
It is hoped that the study will discover the genetic variations that are commonly associated with those who have the disease.
“So once we find out why some people are susceptible to getting Parkinson’s, we can learn more about what factors may actually cause that Parkinson’s to develop,” says Melanie Brandabur, M.D., the clinic director of the Parkinson’s Institute.
Because of the funding patients will only have to pay $25 for the scan. The usual cost of such extensive scanning costs $399. For the fee those involved with the study will also know matching it to the likelihood of developing 105 diseases. The small fee also will ensure that those involved with the study have an interest in the outcome.
Says Ms. Wojcicki:
“We want to screen individuals who take an interest, so having some sort of barrier where they pay a nominal amount should weed out the individuals who just pick it up because it’s free,” she said. “We want to make sure it’s a community of individuals who are really vested.
“Basic discoveries can definitely lead to new treatments, and we hope any information we find gets used for new therapies.
“Secondly, if there is a genetic component to Parkinson’s, nothing is more profitable to individuals than helping out their children.”
The study is not like most clinical studies. First of all the company is not a standard research lab. Participant driven research is a new way to look at a disease. First off those in the study will be receiving information on their DNA. It will allow academic scientists to ethically obtain DNA research while those in the study also have a gain. A win-win combination.
Any discoveries from this study will be made available to other researchers