The Fox Focus Fall/Winter 2017 - Page 2

Research We All Have a Different Disease (continued from cover) HOW IT WORKS Fox Insight is designed to flexibly serve up research opportunities in a range of forms including simple Q&A surveys, integration of wearable technologies, genetic studies and objective measures of disease (such as keyboard tapping or voice recognition). By taking part, participants are contributing to a body of data (collectively known as patient- reported outcomes, or PROs) that Fox Insight compiles, de- identifies and makes available to qualified Parkinson’s researchers worldwide in real time for independent studies. “Patients are true experts on Parkinson’s disease,” says Todd Sherer, PhD, chief executive officer of The Michael J. Fox Foundation (MJFF). “PROs amplify the patient voice in research by enabling scientists to study symptom frequency and variability, rate of progression, medication response and other aspects of life with disease that are challenging to capture through individual interactions between patients and their doctors.” Scientists can correlate this patient-contributed data with the cellular/molecular profile of the disease, he adds, helping to Enrolling and participating in Fox Insight take place online at foxinsight.org. Once enrolled, volunteers receive email prompts to return to the Fox Insight website for quarterly online “study visits.” illuminate poorly understood or unknown aspects of PD and open new avenues of research to better address patients’ unmet medical needs. “Historically we’ve had specialists telling us how to live with Parkinson’s disease. But the information was only flowing in one direction,” says MJFF Patient Council member Carey Christensen of Stanwood, Washington, diagnosed with PD in 1999 at 41. “For a long time, there didn’t seem to be any good way for researchers to ask the patient what was our actual experience.” PATIENTS POWERING PROGRESS “What I find really fascinating when I talk to Parkinson’s patients is that we all have a different disease,” Michael says. “A million of us, we have a million different versions of it. We have difficulty with things that someone else may not deal with at all. Gastrointestinal stuff, issues with sleeping. Capturing this natural back-and-forth between patients really helps doctors and researchers.” 2 The Fox Focus Fox Insight volunteers also may consent to link their Fox Insight data to specific sub-studies, which may be designed and carried out in partnership with the Foundation or independently run, allowing research teams worldwide to add a PRO component to their trials. The Fox Insight Genetic Sub- study, a collaboration between MJFF and 23andMe, is one such sub-study. It is a groundbreaking opportunity to drive Parkinson’s genetic research toward practical, patient-relevant outcomes. Qualified Fox Insight participants who have PD and enroll in the Fox Insight Genetic Sub-study will receive a 23andMe Health and Ancestry kit. Completing the kit provides the opportunity for researchers to pair de-identified genetic information with ongoing Fox Insight contributions, expanding the value of each dataset by correlating molecular and genetic information with patients’ own characterization of the disease. (continued on page 10)