Fox Insight: a Large-Scale Web-Enabled Parkinson's Disease Study

Objective: Describe the Fox Insight platform and preliminary cohort characteristics Background: Parkinson’s disease (PD) is the 2 nd most common neurodegenerative disorder in the USA. While multicenter clinical research networks allow for study of large numbers of patients, only a minority of the PD population are represented in PD research. Thus, web-based tools that allow data collection from larger numbers of patients that may not have in-person access to research centers could be of great value in self-reported, patient-oriented PD research. The Fox Insight study (and online portal) was designed and is administered by The Michael J Fox Foundation for Parkinson’s Research (MJFF). Its goal is to obtain comprehensive longitudinal data on over 100,000 individuals with PD in North America and to act as a tool through which surveys can be administered to large numbers of PD patients representing the broader PD population. Design/Methods: The online survey tool Fox Insight was developed by MJFF in collaboration with Movement Disorders specialist and a patient advisory committee. It consists of several structured questionnaires that query medical/surgical and family history, medications, motor and non-motor symptoms, and quality of life. Participants register via the Fox Insight website (https://foxinsight.michaeljfox.org), and electronic consent is obtained. Email reminders are sent every 90 days to update core information and/or prompt response to new surveys Results: As of Sept.27,2016, 4530 completed baseline assessment; 3534 self-identified as having PD. The self-reported PD group were older than the non-PD group (mean age 60.25(11.33) vs 49.52(15.62) years) and less were female (45.05% vs. 71.34%). 90% were Caucasian in both groups. 1941(75%) of 2582 subjects eligible for the 1-year assessment have completed it. Conclusions: Preliminary data from Fox Insight demonstrate the feasibility of a web-based survey tool for longitudinal assessment of PD. Validation of self-reported diagnosis, and efforts to maximize long-term retention and participation of minorities is underway. Study Supported by: Fox Insight is funded by The Michael J. Fox foundation for Parkinson’s Research. Disclosure: Dr. Chahine has nothing to disclose. Dr. Caspell-Garcia has nothing to disclose. Dr. McLaughlin has nothing to disclose. Dr. Marras has nothing to disclose. Dr. Standaert received personal compensation for activities with Auspex Inc., Teva Neurosciences, Serina Therapeutics, Lundbeck, Abbvie, the Michael J. Fox Foundation for Parkinson Research, Partners Healthcare, the University of Michigan. Dr. Standaert has received research support from Abbvie, the American Parkinson Disease Association, the Michael J. Fox Foundation for Parkinson Research, the National Multiple Sclerosis Society, the RJG Foundation, and National Institute of Health. Dr. Ravina has received personal compensation for activities with Biogen Idec as an employee. Dr. Kenney has received personal compensation for activities with Biotie as an employee. Dr. Chowdhury has nothing to disclose. Dr. Sherer holds stock and/or stock options in Pfizer. Dr. Kopil has nothing to disclose.