This week The Michael J. Fox Foundation announced the launch of a new Parkinson’s research initiative called Fox Insight to more effectively capture the experience of people living with Parkinson’s disease while accelerating the pace of research.
As part of our broader collaboration with The Foundation, 23andMe is inviting participants of its more than 12,000 strong Parkinson’s Research community to join the initiative. While the two organizations have a long history of working together to study Parkinson’s disease, this new initiative will make data broadly available to researchers, drug makers, and regulators worldwide starting in 2018, with the goals of sparking innovation and discoveries around Parkinson’s disease.
The hope is to recruit tens or even hundreds of thousands of people with Parkinson’s to be involved in a collaborative and diverse cohort of patients that will add new kinds of information that could be used quickly accessed by qualified researchers. New technology and leveraging online tools allow for those with Parkinson’s to more easily contribute data, allowing researchers to pair it with genetic data that could ultimately accelerate discovery.
In addition, The Michael J. Fox Foundation and 23andMe are launching the Fox Insight Genetics substudy. This will give eligible Fox Insight participants with Parkinson’s an option to be genotyped by 23andMe at no cost, and contribute their deidentified genetic data to research.
For 23andMe, which pioneered the use of genetics with online tools and people-centered research, this offers a chance to build upon the success of its work on Parkinson’s disease and encourage innovation by qualified outside researchers.
“Joining forces with The Michael J. Fox Foundation will help our research goals of understanding, treating and preventing this disease,” said Anne Wojcicki, 23andMe CEO, and co-founder. “Making the data available to the wider research community will accelerate our understanding of Parkinson’s disease.”
The goal is to better understand Parkinson’s disease with the hope of finding new treatments. But the initiative is also a response to Parkinson’s patient’s desire to actively contribute to research and share their own experience, which isn’t always captured in traditional disease research.
“What I find fascinating when I talk to Parkinson’s patients is that we all have a different disease,” says Michael J. Fox, who launched the Foundation in 2000 with a vision of bringing Parkinson’s patients and scientists into a true two-way dialogue to speed patient-relevant research outcomes. “One of our Foundation’s most important goals has been finding a way to incorporate patient involvement and patient knowledge and wisdom and enthusiasm in research. Capturing the natural back-and-forth between patients helps doctors and researchers.”
Starting next year de-identified data from Fox Insight will be made easily accessible to qualified Parkinson’s researchers, for independent study. This sort of access to the research could shorten research timelines, and speed the development of new therapies.
Go here for more information about Fox Insight.