‘Robust’ Genetic Patient Data Open to Researchers via Fox DEN

The Michael J. Fox Foundation for Parkinson’s Research (MJFF) and 23andMe are opening “robust” genetic data to researchers worldwide that could help in identifying markers of treatment response and disease progression, and ultimately may lead to better therapies for Parkinson’s disease.

These new and de-identified (for privacy) data, which includes about 650,000 distinctive genetic markers from more than 10,000 Parkinson’s patients, were added to 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,” Brian Fiske, PhD, chief science officer of research programs at MJFF, said in a press release.

“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,” he added.

MJFF and 23andMe previously collaborated on gathering genetic data through the MJFF’s Fox Insight platform. Fox Insight is an ongoing, online clinical study with more than 52,500 participants to date who have shared their health-related experiences and perspectives to advance research in Parkinson’s. Fox Insight accepts participants from anywhere in the world, including volunteers without Parkinson’s whose information will be used for comparison. You can find information on how to participate here.

The platform for the clinical study, Fox DEN, collects new data from Fox Insight every month and is operated by the Laboratory of Neuro Imaging at the University of Southern California.

De-identified genetic data, data from patient-reported surveys on symptoms, daily activities, and environmental exposures, are among the types of information that Fox DEN gathers. Authorized researchers can then group the data based on specific variables and study, for example, genetic mutations linked to Parkinson’s.

Over 600 researchers are registered to use Fox DEN, and almost 1.5 million variables have been downloaded. Qualified researchers worldwide can register for access to Fox DEN through its webpage.

Fox DEN was launched in April 2019, and it first shared data on 17 unique single-nucleotide polymorphisms (SNPs) collected from about 2,000 Fox Insight participants. Of note, an SNP is a variation in a single nucleotide, or DNA building block, and it is the most frequent type of genetic variation.

“Genetics, along with environmental data, can inform many facets of disease including: risk, progression and response to medication,” said Paul Cannon, PhD, 23andMe’s principal program manager for Parkinson’s disease. “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.”

By working in collaboration with Fox Insight and 23andMe, “I hope that … 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, a Fox Insight participant with Parkinson’s who agreed to share her genetic data.