Fox Insight is an online clinical study to gather the world’s largest collection of data about daily life with Parkinson’s disease (PD) directly from patients and their families and friends. Collecting this information through this study will serve two important purposes:
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Fox Insight is looking for participants with and without Parkinson’s to enroll in this study. Control volunteers are essential to providing researchers with important information for comparison to people who have Parkinson’s. For this reason, the study is open to anyone interested in sharing their health information to advance Parkinson’s research.
Information about how patients experience PD is typically collected through costly clinical studies whose findings represent only a small number of individuals. Plus, the data collected through these studies is often held confidentially, limiting its power to advance the field. Fox Insight is a new kind of clinical study, taking a crowd-sourced, open-access approach to capturing patients’ invaluable firsthand experience of living with Parkinson’s and comparing it to the relative experiences of people who do not have the disease.
Using state-of-the-art, secure technology, Fox Insight makes it easier to collect data from thousands of patients and controls and offers researchers the opportunity to access and analyze an unprecedented, de-identified dataset.
Today, we know that Parkinson’s disease and its progression vary widely from one patient to the next. And limited understanding of the day-to-day PD patient experience slows progress toward a cure and makes it difficult to manage the disease. So having this incredible amount of self-reported information about daily life with PD will help scientists better understand what patients experience day to day and better focus their research to address patient needs. As one of the only open science initiatives to put patients at the center of the research process, Fox Insight is creating an invaluable partnership between volunteers and researchers to ultimately accelerate research toward a cure.