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The Michael J. Fox Foundation for Parkinson's Research (MJFF) and 23andMe have launched 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.