Parkinson's Clinical Trial Companion Navigating Clinical Trials - Page 45

Fox Insight Fox Insight is an online clinical study that collects day-to-day information about the lived experience of Parkinson’s directly from patients. People with and without the disease can contribute to Fox Insight by providing real-world information on symptoms, medication and other factors in quarterly online questionnaires. This information could increase understanding of Parkinson’s, influence research and inform drug development. Fox Insight also offers opportunities to contribute additional data via supplemental surveys and sub-studies, such as the Fox Insight Genetic Sub-study. This collaboration between The Michael J. Fox Foundation and personal genetics company 23andMe allows people with Parkinson’s to expand the value of information they contribute by pairing their Fox Insight data with their genetic profile. Participants are eligible for genetic counseling on Parkinson’s risk genes at no cost. The combined dataset can provide scientists a more holistic view of Parkinson’s to speed better treatments and a cure. All data contributed through Fox Insight and its sub-studies are de-identified and made available to qualified researchers to advance understandings of Parkinson’s disease. Register for Fox Insight at foxinsight.org. The Parkinson’s Progression Markers Initiative The Parkinson’s Progression Markers Initiative (PPMI) is The Michael J. Fox Foundation’s landmark, observational clinical study that launched in 2010 to find Parkinson’s biomarkers — disease indicators that are critical missing links in the search for better Parkinson’s disease (PD) treatments. At PPMI’s 33 clinical sites in 11 countries, more than 1,500 participants — people with and without PD, at risk for PD or with genetic connections to PD — contribute invaluable data and biosamples (e.g., blood, spinal fluid) into the most robust Parkinson’s database and specimen bank ever created. As an observational study, PPMI does not test an intervention, such as a drug or treatment. Instead, PPMI follows participants for at least five years to better understand biologic changes that occur over time. This helps researchers understand the progression of Parkinson’s and potentially identify one or more biomarkers of PD. PPMI is sponsored by MJFF and funded in partnership with 21 biotech and pharmaceutical companies. Find out more about PPMI at michaeljfox.org/ppmi. Appendix 43