- Collaboration with 23andMe enables robust sharing of de-identified genetic data with researchers worldwide through the Fox Insight Data Exploration Network (Fox DEN)
- Via Fox DEN, researchers can create cohorts and statistical models combining Parkinson’s-related factors with genetic mutations to accelerate scientific discovery
- Data is available for exploration and download by qualified researchers at foxden.michaeljfox.org
[June 8, 2021] — NEW YORK, NY and SUNNYVALE, CA — The Michael J. Fox Foundation for Parkinson's Research (MJFF) and 23andMe, Inc. (23andMe) today announce sharing of robust genetic data from the largest cohort in Parkinson’s disease (PD) research. De-identified data on approximately 650,000 unique genetic markers from more than 10,000 people with PD joins an open-access set of patient-reported outcomes data to form an enriched resource ripe for exploration into the intersection of genetics and clinical disease experience.
The Foundation and 23andMe have collaborated through MJFF’s online clinical study Fox Insight, which gathers data on disease experience and perspective from more than 52,000 volunteers around the world with and without PD. Fox Insight participants with Parkinson's in the United States were able to contribute their de-identified genetic data via their consent and participation in the genetic part of the study powered by 23andMe. That data is now available through the Fox Insight Data Exploration Network (Fox DEN), a data access and analytics platform.
“Findings from genetics research have revolutionized understanding of Parkinson’s and development of new therapeutic approaches, but there is much more to uncover,” said Brian Fiske, PhD, chief science officer of research programs at MJFF. “The availability of this rich data set enables further discovery around modifiers of disease risk and experience that may transform how we treat and care for Parkinson’s. We are grateful for the contributions of study participants, the collaboration of 23andMe, and the efforts of the scientific community toward this shared goal.”
Fox Insight and 23andMe first shared data in Fox DEN in April 2019, including data on 17 unique genetic markers from about 2,000 Fox Insight participants. These markers are called single-nucleotide polymorphisms (SNPs) — single-letter changes in the DNA sequence that contribute to the normal and abnormal variations seen between individuals.
“Genetics, along with environmental data, can inform many facets of disease including: risk, progression and response to medication,” said Paul Cannon, PhD, 23andMe's Parkinson's disease principal program manager. “It is our mission to uncover those connections to improve health and quality of life of individuals living with Parkinson’s, and this partnership and the availability of data accelerates the pace of those breakthroughs.”
Fox DEN holds de-identified genetic data and information from patient-reported surveys on health and disease, symptoms, daily activities, and other factors relevant to Parkinson's, such as environmental exposures. Fox DEN authorized researchers can create and analyze cohorts with specific variables, such as particular genetic mutations, which could deepen understanding of biological and clinical Parkinson's subtypes. More than 600 researchers have registered to use Fox DEN, with nearly 1.5 million variables downloaded.
“I hope that by working in collaboration with Fox Insight and 23andMe, scientists will gain a better understanding of what causes Parkinson's and how the disease progresses to develop tests for early detection; to develop more effective treatments; and, ultimately, to find a cure,” said Natasha Kane, 36, Fox Insight participant with PD who contributed de-identified genetic data via her consent and participation in the genetic part of the study powered by 23andMe.
The Laboratory of Neuro Imaging at the University of Southern California maintains and operates the Fox DEN platform. The platform is updated monthly with new data from Fox Insight. All contributed data from Fox Insight and 23andMe is de-identified and participant-consented to maximize privacy and protection of individual-level information. Qualified researchers worldwide can register for access to Fox DEN at foxden.michaeljfox.org.
About The Michael J. Fox Foundation for Parkinson's Research
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding $1 billion in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson's awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world.
23andMe, Inc., headquartered in Sunnyvale, CA, is a leading consumer genetics and research company. Founded in 2006, the company’s mission is to help people access, understand, and benefit from the human genome. 23andMe has pioneered direct access to genetic information as the only company with multiple FDA clearances for genetic health reports. The company has created the world’s largest crowdsourced platform for genetic research, with 80 percent of its customers electing to participate. The 23andMe research platform has generated more than 180 publications on the genetic underpinnings of a wide range of diseases, conditions and traits. The platform also powers the 23andMe Therapeutics group, currently pursuing drug discovery programs rooted in human genetics across a spectrum of disease areas, including oncology, respiratory, and cardiovascular diseases, in addition to other therapeutic areas. More information is available at www.23andMe.com.
The Michael J. Fox Foundation