Parkinson's Clinical Trial Companion Navigating Clinical Trials - Page 26

Studying Later-Stage Symptoms Many aspects of Parkinson’s disease (PD) cannot be studied until later in the disease course. Certain symptoms — dementia, gait and balance issues, and dyskinesia (uncontrolled movements), for example — mainly appear in people with moderate or advancing Parkinson’s disease. Studies to better understand these features of PD and test treatments to ease their impact (e.g., drugs, exercise, physical therapy) need volunteers who experience them. Observational studies, too, may call for people with long-established disease. Fox Insight, MJFF’s online study, is capturing data on the lived experience of Parkinson’s at every stage. Sharing with researchers what life is like with advancing PD can help allocate resources, design studies and advocate for new treatments. Certain trials evaluating disease- modifying therapies also are open to people who have had Parkinson’s for several years and are taking PD medications. Participation after DBS and Other Surgical Procedures A commonly asked question is, “Can I still participate in research if I’ve had deep brain stimulation (DBS)?” The short answer is yes — there is a study for everyone. However, some trials may not include people who have had DBS or other surgical procedures on the brain, or who take certain medications. Many, though, welcome people who have undergone or are using a number of treatments. Review the inclusion and exclusion criteria of a study to see if you may be eligible, and speak with your doctor about the effects of research participation on your care regimen. 24 Calling on Your Loved Ones With later-stage Parkinson’s may come limitations and a greater need for support and assistance from others. Volunteering for clinical research may not be a priority. Care partners also may not be aware of the range of opportunities for participating. In a 2014 Harris Poll survey, only 41 percent of those caring for someone with advancing PD said they would be likely to encourage the patient to participate in research. It can take time and effort for a care partner to help their loved one volunteer. Consider, though, that studies come with varied levels of commitment and helpful resources. Care partners could help complete an online survey. And some study sites are piloting the use of rideshare services such as Lyft to transport volunteers to site visits. When deciding to participate in a trial or study, your care partner can help evaluate the costs and benefits. It may take time and energy to volunteer for a trial, but that study could help test a new treatment and offer more face time with Parkinson’s experts. Keep in mind that some research focuses on care partners’ needs too, so research participation can extend beyond treating PD per se. Remember fact 5: Your Safety Is Top Priority. Donating Brain Tissue to Research Researchers can learn much by studying the brains of people who have lived with Parkinson’s disease. For example, they analyze brain tissue to understand the effects of Parkinson’s and where to target treatments. There are a number of brain donation programs around the country. Some require advance consent and visits to a study site for periodic assessments. Navigating Clinical Trials: A Guide for Parkinson’s Patients and Families You should discuss this decision with your loved ones, and ensure that they know your intentions. Expressing your wishes to your family now can help them plan for and coordinate your donation. Your doctor also can help answer questions and connect you with a donation program. You can learn more about the National Institutes of Health program at neurobiobank.nih.gov.