Parkinson's Clinical Trial Companion Navigating Clinical Trials - Page 15

A Technological Revolution in Research In the 21st century, innovations in technology are accelerating the pace of Parkinson’s research. People with Parkinson’s disease (PD) and researchers alike benefit from these new tools. For people with PD, it is now easier to find and participate in clinical trials, and to track their experiences with the disease. And with new means of analyzing data, researchers are working to create a more complete picture of PD than was possible in the past. Clinical Studies Go Online Widespread use of the internet has opened new ways for people with Parkinson’s to participate in clinical research. Some studies are now carried out mainly or entirely online. That makes participation easier for many people who might not otherwise: those who live far from academic medical centers where much research takes place, who have difficulty traveling, who have not shared their PD diagnosis with others, or who simply don’t have much spare time. For example, MJFF’s online study, Fox Insight (foxinsight.org) gathers data directly from people with PD about their experience living with the disease. Every 90 days, participants log on from wherever is convenient to tell researchers about their symptoms, medications and other aspects of life with PD. When analyzed as a collective dataset, this information can give scientists insights that could lead to better understandings of disease and new treatments. In addition to widening the scope and diversity of people who can get involved, computer access has made it simpler to get started. Resources such as MJFF’s Fox Trial Finder (foxtrialfinder.org), an online clinical trial matching tool, make it easier for volunteers to connect with the studies that need them, including those they can do from home. Facebook and other social media platforms also have become a source of information on clinical trials. supplement their understanding of potential interventions, and to find better ways to adjust medications and monitor disease progression. Technology also is bringing researchers to patients. Telemedicine — electronic methods of real-time interactive communication, such as two-way video — enables investigators to talk to and evaluate participants in their own homes. Mobile Technology Puts Research in Patients’ Hands Data Drives Discovery During a typical office visit, a physician spends five to 10 minutes examining a patient with Parkinson’s. It’s essential to PD care but, given the variability of symptoms an individual may experience day to day and even throughout the same day, it’s only a snapshot of a person’s PD. With smartphones, apps and wearable devices such as fitness monitors, people with PD now can record how they live with the disease 24/7 — their symptoms, medication effects and activity levels. Researchers are using this technology in stand-alone trials and within traditional clinical trials to Online studies and wearable devices have enabled the collection of large amounts of data from thousands of people, both with and without PD, over long periods. These substantial datasets can demonstrate patterns to uncover Parkinson’s-specific insights — information that was never previously available to researchers. This holds enormous promise in the pursuit of a cure. Learn more about MJFF