The Michael J. Fox Foundation for Parkinson’s Research (MJFF) and 23andMe Inc (23andMe) are sharing genetic data with researchers worldwide through the Fox Insight Data Exploration Network (Fox DEN).
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, a media release from The Michael J. Fox Foundation for Parkinson’s Research explains.
“Findings from genetics research have revolutionized understanding of Parkinson’s and development of new therapeutic approaches, but there is much more to uncover.
“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.”
— Brian Fiske, PhD, chief science officer of research programs at MJFF
First Shared in 2019
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. 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.”
— Paul Cannon, PhD, 23andMe’s Parkinson’s disease principal program manager
Genetics Data at Fox DEN
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.”
— 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 who to register for access, visit Fox DEN.
[Source(s): The Michael J. Fox Foundation for Parkinson’s Research, PR Newswire]
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