Parkinson's Clinical Trial Companion Navigating Clinical Trials - Page 17

How Do You Get Involved in Parkinson’s Research? Thinking about volunteering for a clinical study means weighing the potential benefits and risks, just as you would when starting a new medication or considering a surgical procedure to manage your Parkinson’s symptoms. With every decision you make in life, you want to make sure the pros outnumber cons. Taking part in research can be empowering and provide access to Parkinson’s experts and the latest treatments. But it also can expose you to risk, side effects or discomfort. Discuss your thoughts on research with your family and care partner, and talk to the trial team about the requirements for a specific study. Your doctor can help you decide which research is right for your individual situation. process, you will learn about specific risks of particular trials. Safeguards are in place to minimize serious side effects, but these may be a possibility in some studies. Other potential cons of research participation may include: Weigh Potential Benefits and Risks + + Costs that are not covered by your insurance company, or You may find it helpful to write out general pros and cons as well as those specific to the study. People with Parkinson’s often say that the pros of research participation include: + + Playing an active role in your care, + + Advancing science for yourself, others in the Parkinson’s community and future generations, + + Accessing promising new treatments that aren’t available outside of clinical research, + + Partnering with Parkinson’s experts, often at leading health care facilities, and + + Being at the forefront of the latest treatments and research. In general, research risks typically involve potential side effects or adverse events related to trials that test new therapies. During the informed consent + + Lack of benefit from an investigational treatment, + + Not getting to choose the group (treatment or placebo) you’re assigned to in a randomized study, + + Increased visits to a clinic or hospital. If the time and effort associated with certain trials is a deterrent, remember that there are many trials requiring varying levels of commitment. An online trial or one that requires just a single in-person visit may be a better fit. Learn about Parkinson’s Trials As you consider your involvement, look into the trials that need volunteers. There’s a lot you can do to educate yourself about available trials: Remember fact 6: There Are Many Ways to Find Trials and Studies. + + Talk to your doctor about clinical research they or their colleagues may be leading, + + Ask others in the Parkinson’s community who have participated in trials about their experiences, + + Sign up for Fox Trial Finder (foxtrialfinder.org), MJFF’s online tool that matches eligible volunteers to recruiting clinical trials, + + Visit a local clinical trial fair, where you can learn more about different types of trials in your area, + + Search www.clinicaltrials.gov, a site maintained by the National Institutes of Health that holds information on clinical trials and studies in all 50 states and more than 200 countries, and + + Check out MJFF’s and other Parkinson’s organizations’ websites and resources. Talking to Your Doctor Your doctor knows your medical situation best, so it’s important to get his or her take on research and how you can volunteer. Some questions you may want to discuss with your physician, in addition to the trial team: + + Can I keep my own health care provider? The short answer is: yes. Although you will have appointments with the clinical research team in the context of the trial, this is not the same as your usual med ical care. The Parkinson’s doctors you may see as part of a clinical trial will not make treatment decisions Chapter 1 — Clinical Research Basics 15