The Michael J. Fox Foundation for Parkinson's Research (MJFF) and 23andMe have shared a repository of robust genetic data from the largest cohort in Parkinson’s disease (PD) research to date. The de-identified data on approximately 650,000 unique genetic markets from in excess of 10,000 PD patients joins an open-access patient-reported outcomes dataset, providing a resource for researchers and drug developers to explore solutions for the disease.
MJFF and 23andMe partnered via the online clinical study Fox Insight, designed to gather information on disease experience and perspective from more than 52,000 volunteers around the world (both with and without PD). US participants with PD contributed the de-identified genetic data through consent and participation in the study; the data can be assessed through the Fox Insight Data Exploration Network (Fox DEN) access and analytics platform.
MJFF chief science officer of research programs Brian Fiske said genetic research findings have greatly advanced understanding of PD and the development of novel treatments.
“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,” he said. “We are grateful for the contributions of study participants, the collaboration of 23andMe, and the efforts of the scientific community toward this shared goal.”
The collaborators first shared data in Fox DEN back in April 2019, including data on 17 unique genetic markers from approximately 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, 23andMe's PD 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 contains 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. Authorized researchers have the ability to create and analyze cohorts with particular variables (i.e. genetic mutations) that could deepen understanding of PD subtypes; to date, more than 600 researchers have registered to use Fox DEN, downloading nearly 1.5m variables.
Natasha Kane, a Fox Insight participant and PD patient, said, “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.”
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; researchers worldwide can register for access to Fox DEN at foxden.michaeljfox.org.