Parkinson's Clinical Trial Companion Navigating Clinical Trials - Page 5

I allowed myself to see what I already knew to be true — meaningful contribution does not necessarily require demanding, time-consuming trials. There are many types of studies, some more compatible than others with my time constraints. As I explored my options, I realized my level of involvement could change over time to suit my evolving lifestyle and commitments. Since then, I’ve done online studies; trials that require just a single visit to a clinic; and some long-term research. One of the most important things patients can do now is contribute to genetic research, which may, in some studies, simply involve sending in a sample of saliva. In whatever way life allows, participation in clinical studies is vital. Research is only possible with volunteers. In this way, we play a critical role in changing our own lives. Soania Mathur, M D, O ntario Fighting back through research My first reaction to my Parkinson’s diagnosis was to fight back. I agreed to participate in a clinical study the very day I was diagnosed. I knew the best way to fight the disease was to advance treatments that could slow or stop it from progressing. I continue to enroll in as many studies as possible, and have no plans to stop. It excites me to work directly with researchers on the front lines of science that could lead to a cure. That interaction is what gives me energy. It makes me optimistic to see progress and know that I’m actively taking part in it. I can feel the enormity and the power of being involved in something so important for myself and for everyone who lives with Parkinson’s. Lynn Hagerbrant, Connecticut Changing personal perspectives One of my biggest struggles with the disease was knowing that Parkinson’s gets progressively worse over time. I worried about my future, my sense of identity and the potential loss of my independence. As a researcher myself (albeit not in the life sciences), I understood the importance of clinical trials to advance disease understanding and treatments, but I wasn’t sure I wanted to be on this side of them. But I decided to get off the bench, and the interactions I had with the scientists themselves quickly affirmed that decision. Many trial investigators I met had personal reasons for being in the field. These connections drive them to spend hours in the labs or caring for patients. This notion continues to fuel my passion for research participation today. Fighting Parkinson’s can feel like such a solitary battle, but research unites us. The connection to the broader Parkinson’s community has changed the lens through which I view my own disease. Bryan Roberts, New York Addressing logistical challenges When my doctor told me that my increasing twitching and tremors were caused by Parkinson’s disease, I said “Okay, so what does that mean?” I scoured Google and discovered professional websites with a wealth of information. But my searches also uncovered chat rooms, websites, workshops, conferences and support groups. I ventured out into the community and met many people with Parkinson’s at different stages of their disease. With them, I shared a desire to make a difference and discovered the critical need for research participants. When we learned a dismal stat — less than one patient is recruited per clinical site per month — we created the Clinical Trial Transportation Program to help organize travel to different clinical trials in the region. By channeling our motivation to help willing participants overcome transportation or access concerns, we hope more trials can be conducted more efficiently, leading to more Parkinson’s treatments. Steve DeWitte, Connecticut The passion we feel about being part of advancing the Parkinson’s cure binds us, and the realization that we are in this together empowers us. How each of us came to research participation was as individual as our experiences with the disease itself, but the uniting thread was our desire to change the course of Parkinson’s and change lives — including our own. You, too, are an important part of this community. You, too, hold the power to directly impact your future and the future of millions living with Parkinson’s disease. You, too, can experience the tremendous power of research participation. A Letter from The Michael J. Fox Foundation Patient Council 3