The Fox Focus Fall/Winter 2017 - Page 10

Research We All Have a Different Disease (continued from page 2) All Fox Insight activities are governed by strict regulatory and ethical review standards for clinical studies. VALUE BEYOND DISCOVERY Fox Insight also can help navigate the personal Parkinson’s journey. The Fox Insight Community tool offers a snapshot of the aggregate data from all Fox Insight participants (e.g., most bothersome and frequent symptoms, family neurological history) so users can benchmark their own experience against that of others. And because nearly two-thirds of patients in a 2014 survey reported that online tools would be helpful in making physician 3 Thu appointments more productive, Fox Insight generates appointment reminders and reports from volunteers’ questionnaires to help prepare for upcoming doctors’ visits. Fox Insight also will leverage its large, diverse cohort to amplify the collective patient voice in approval and reimbursement of new treatments. Regulators and payers traditionally have relied on periodic clinical assessments to make decisions about approving and reimbursing new therapies. Today they increasingly rely on PROs and Health Economics and Outcomes Research (HEOR) information to holistically understand the potential impact of new treatments in real-world clinical practice and day-to-day life with disease. impact of a proposed treatment on quality of life or an individual’s ability to perform everyday activities. Even after products are on the market, PROs can provide a picture of patients’ satisfaction with treatment and factors that may affect compliance or the need for additional research and development. MORE THAN 7,000 VOLUNTEERS ALREADY ENROLLED Fox Insight launched in beta in March 2015. More than 7,000 volunteers (80 percent with Parkinson’s) have contributed data that helped the Fox Insight study team optimize the platform for the study’s official launch in fall 2017. Visit foxinsight.org to learn more and register today. PROs provide complementary, credible data on the actual Each month, join our Third Thursdays Webinar Series to hear medical professionals and people with Parkinson’s disease (PD) discuss life with PD and the Foundation’s work to accelerate a cure. Log on, listen to the discussion and submit questions to be answered by our panelists. Can’t make it to the live presentation? The full archived series is available at michaeljfox.org/ webinars. CONTINUING MEDICAL EDUCATION CREDIT IS AVAILABLE FOR LIVE AND ARCHIVED PRESENTATIONS. 10 The Fox Focus