One year ago, The Michael J. Fox Foundation (MJFF) launched Fox Insight (foxinsight.org) as an online platform for the Parkinson’s disease (PD) community to share the information it knows best — what it’s like to live with PD every day. Since that time, the number of individuals enrolled has more than quadrupled from 6,500 to over 27,000 — and Fox Insight is just getting started. The study aims to recruit hundreds of thousands of people to contribute data.
Fox Insight consists of online questionnaires where people with and without PD provide information on their symptoms, daily activities and other health factors. Genetics also plays a role in the study. “By combining patient-contributed information with genetic data, researchers are able to form a more holistic understanding of Parkinson’s,” says Sohini Chowdhury, MJFF deputy CEO.
Over time, people enrolled in Fox Insight can expand their contributions to science by participating in additional research offered through the platform, ranging from onetime surveys to longer-term sub-studies. These allow the PD community to translate their knowledge to research while helping scientists speed disease understanding.
“Fox Insight has an engaged cohort primed to participate in research,” says Stephanie Christopher, program director, Medical Device Innovation Consortium, who deployed a survey in Fox Insight last year to better understand what matters to patients in medical device development. “The speed and flexibility of data collection allowed us to collect an incredible number of responses from a wide variety of PD patients in record time.”