Parkinson's Clinical Trial Companion Navigating Clinical Trials - Page 4

A Letter from The Michael J. Fox Foundation Patient Council A Parkinson’s diagnosis affects everyone differently. For some, the news may inspire a desire to take action, though it’s often hard to know where to go or what to do. For others, diagnosis may bring uncertainty, fear or denial. There is no wrong response to such a life-changing event — only your response. As active members of the Parkinson’s community, and colleagues on The Michael J. Fox Foundation’s Patient Council, we have found common ground in our belief that clinical research participation is a critical part of our experiences. It motivates us, inspires us, empowers us and gives us purpose as we navigate daily life with the disease. We each took a different path to volunteering. While a few of us were champing at the bit from literally the day of diagnosis, most took some time to get here. (That’s natural, though we also want you to know that some of the most important studies are open only to those in the very earliest stages of disease.) Many factors, such as age at diagnosis, geographic location, access to care and knowledge of research opportunities, influenced our decisions along the way. Trials, in turn, need us — as well as people who don’t have Parkinson’s — at different times and for different reasons. While some trials need people who are new to Parkinson’s, others need those who have lived with the disease for years. Sometimes people are excluded by their genetic status or having had deep brain stimulation surgery; other times, those are exactly what the study requires. We hope our experiences help you find your own path with Parkinson’s, and, more importantly, remind you that you are not alone in the journey. Seeing the right doctor matters It took me several months to come to terms with what my diagnosis meant for my future. Even then, I wasn’t quite sure what was in store for me. I realized I had to do what I could to help myself, and ultimately help others, while I was able. But I didn’t know where to begin. My local neurologist recommended a movement disorder specialist — a neurologist with specialty training in Parkinson’s. Movement disorder specialists bridge the gap between research and patient care, so they are uniquely positioned to suggest ongoing trials that may be well suited for specific individuals. I registered for my first study shortly after my doctor recommended it. The experience has given me confidence, hope and motivation. Now I use social media to encourage other people with Parkinson’s to connect with movement disorder specialists and ask about trials. Simply put, there is nothing more empowering than being part of research toward a cure. Israel Robledo, Texas Research comes in many forms As a family physician, I knew the importance of research to advance disease understanding and therapeutic breakthroughs. I often encouraged my patients to join clinical trials, but I never participated myself. I was convinced I was too busy, and rested on that excuse for years. Slowly, though, The Michael J. Fox Foundation Patient Council advises the Foundation on programmatic strategies to best convey patient priorities to the research community and its funders; content and emphasis for patient education and outreach relevant to our mission to find a cure; patient roles in developing novel ways to conduct research; and mechanisms for impact assessment. 2 Navigating Clinical Trials: A Guide for Parkinson’s Patients and Families