Parkinson's Clinical Trial Companion Navigating Clinical Trials - Page 42

Afterword: Where Do We Go from Here? Reflections from a Repeat Research Volunteer By Gary Rafaloff I was diagnosed with Parkinson’s disease (PD) in 2012. Like most people, I was left reeling with uncertainty and confusion. Probably a little different from most people, my wife and I signed up for our first clinical trial that same day. (Granted, I have a professional background in research and statistics, so I may have been more comfortable than most with the ins and outs of joining a study.) But as it turns out, that first trial was just the beginning of a new role in my life: repeat research volunteer. I’ve participated in more than 20 scientific projects so far. I’ve worn a smartwatch to monitor my movements, undergone genetic testing, even received infusions of a potentially neuroprotective therapy three times a week (I later learned I had been in the placebo group). You’d think a relentless volunteer like me would know everything there is to know about taking part in research. Still, the guide you’re holding was so informative that I have wanted to read it more than once. Each time I pick it up, I find myself focusing on different aspects and experiencing new emotions. I’m energized by the hundreds of research trials taking place today. (Believe me, this is a significant increase even from just five years ago in Parkinson’s research.) I’m intrigued by the scientific advances in understanding the causes of the disease and its relationship to genetic and cellular pathways. And the stories of the Foundation’s Patient Council and vocal research advocates motivate me and keep me 40 wanting to do more, as much as I can, for as long as I can. I will never stop feeling astounded at the sheer length of time it takes — literally decades — for researchers and regulators to discover, test and approve new treatments for brain diseases. Science has always been a long march, but it’s not lost on me, or on any of the patients I’ve met, that trials simply need more people with Parkinson’s to participate. (It’s hard to wrap my mind around the fact that 85 percent of clinical trials are delayed or never even get off the ground, simply because nobody shows up to take part.) But strangely enough, this also makes me feel hopeful. After all, you and I are living through a moment of immense opportunity. Parkinson’s disease is a diagnosis you wouldn’t wish on anyone. But if I have to have it, I’m grateful it’s at a time when I can play a personal role in bringing groundbreaking new treatments to market. Today there are interventional trials testing therapies to ease some of the most troublesome PD symptoms, and therapies to slow or stop Navigating Clinical Trials: A Guide for Parkinson’s Patients and Families