The Michael J. Fox Foundation for Parkinson’s Research (MJFF) and 23andMe announced the launch of a data and analytics resource for researchers, based on patient experiences, that aims to improve clinical trial design and, subsequently, therapies for Parkinson’s.
Called the Fox Insight Data Exploration Network (Fox DEN), it’s the platform for Fox Insight, an online, MJFF-sponsored clinical study about health-related experiences from volunteers with and without Parkinson’s disease. Fox DEN features patient-reported outcomes, de-identified (for privacy) genetic data, and information exploration tools from what’s known as the most expansive cohort in Parkinson’s investigations.
“Parkinson’s is an extremely variable disease that affects individual patients in unique ways,” said Todd Sherer, PhD, MJFF’s chief executive officer, in a news release. “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.”
Developed by the Laboratory of Neuro Imaging at the University of Southern California, the resource features health and disease survey results, patients’ daily activities, and other information pertinent to Parkinson’s research. It also includes genetic data from 23andMe customers participating in the Fox Insight study. So far, some 35,000 individuals have contributed, with tens of thousands more expected.
The data can be used to enhance disease understanding, and help with clinical trial recruitment and segmentation. Subject co-horts can be created using specific characteristics such as cognitive symptoms, genetic mutations, or environmental exposures. Ultimately, the hope is that research timelines can be shortened, and new treatments are brought to market faster.
“Accelerating research is core to our mission, and making this data available to qualified researchers will do just that,” said Paul Cannon, PhD, disease program manager for 23andMe, a leading genetics and research company. “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 Insight is invaluable in that it is collecting vast amounts of disparate data on the real-world experiences of Parkinson’s patients, said David G. Standaert, MD, PhD, chair of the University of Alabama at Birmingham’s neurology department.
“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,” he added.
Interested investigators globally may register here.
23andMe is a private company specializing in DNA analysis and “ancestry services.”