Michael J. Fox Foundation and 23andMe Launch Fox DEN
April 29, 2019
New Data Platform Combines Patient-Reported Outcomes and Genetic Information in Parkinson’s
- The Fox Insight Data Exploration Network (Fox DEN) is a data and analytics resource for the research community
- Collaboration with 23andMe adds de-identified genetic data from consented research participants, combined with patient-reported outcomes from Fox Insight, an online Parkinson’s clinical study
- Data is available for exploration by qualified researchers at foxden.michaeljfox.org
April 29, 2019 – NEW YORK, NY and MOUNTAIN VIEW, CA – The Michael J. Fox Foundation for Parkinson’s Research (MJFF) and 23andMe today launch the Fox Insight Data Exploration Network (Fox DEN), the data access and analytics platform for Fox Insight, an online clinical study sponsored by MJFF. Fox DEN contains patient-reported outcomes, de-identified genetic data and data exploration tools from the largest cohort in Parkinson’s disease research.
Todd Sherer, PhD, chief executive officer of MJFF, says, “Parkinson’s is an extremely variable disease that affects individual patients in unique ways. This complicates drug development and clinical trial design. Fox DEN addresses this by bringing the patient experience to researchers at an unprecedented scale and amplifying the patient voice in the development of new therapies for Parkinson’s.”
Fox DEN features information from surveys on health and disease, symptoms, daily activities, and other factors relevant to Parkinson’s. This is coupled with genetic information from 23andMe customers who have joined the Fox Insight study. To date, more than 35,000 people have contributed data to the study and MJFF plans to recruit tens of thousands more. Fox DEN is updated with new data from the Fox Insight study, and all research data is de-identified and participant-consented for data sharing in Parkinson’s research.
Paul Cannon, PhD, 23andMe’s Parkinson’s disease program manager says, “Accelerating research is core to our mission and making this data available to qualified researchers will do just that. Fox DEN will facilitate access to and exploration of this important information increasing the pace of Parkinson’s research and opening up new study opportunities.”
Fox DEN is a resource for the research community, including drug developers. The data can be used to increase understanding of Parkinson’s, inform decisions on patient recruitment and segmentation, ultimately shortening research timelines. Analysts can create cohorts of subjects with characteristics matching specific interests, such as environmental exposures, cognitive symptoms or particular genetic mutations.
David G. Standaert, MD, PhD, chair of the University of Alabama Birmingham Department of Neurology, says, “Fox Insight is a unique study that is gathering data on the real-world experience of people with Parkinson’s disease on an unprecedented scale. Fox DEN is the window through which we can study this data and gain important new insights into the causes, consequences and treatment of Parkinson’s.”
The Laboratory of Neuro Imaging at the University of Southern California developed Fox DEN. All the contributed data from Fox Insight and 23andMe is de-identified 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
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 more than $800 million 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. For more information, visit us on the web, Facebook, Twitter and LinkedIn.
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% 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. 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.