Parkinson's Clinical Trial Companion Navigating Clinical Trials - Page 14

Supporting Loved Ones through Research When Karen Jaffe was diagnosed with Parkinson’s disease (PD), her husband, Marc, looked for ways to help. He learned studies need control volunteers, and was eager to participate. “I wanted to provide more than emotional support to Karen, and this was a tangible way to do that,” says Marc. Still, he didn’t jump immediately at the chance. He admits he had hesitancies about certain study procedures, and worried that testing might uncover an abnormality in his otherwise good health. But six months later, Marc gave Karen an unexpected gift — his enrollment papers for MJFF’s Parkinson’s Progression Markers Initiative (PPMI). Marc jokes that he joined PPMI, an observational study looking for PD biomarkers (objective measures to diagnose and track disease), because he didn’t have an anniversary present. On a serious note, he adds, “When I learned how critical biomarker research is, it made it easier to set aside any concerns I had.” As part of PPMI, Marc now undergoes annual testing. He’s had pictures of his brain taken, and given blood and spinal fluid. He’s also filled out questionnaires about his sleep and had his memory tested. In the years since he joined, Marc hasn’t missed an appointment. He has had procedures done at different centers with different doctors, and says each makes the experience as comfortable as possible. Marc participates in other trials, too. When he and Karen are both eligible for a study, they use the opportunity to drive research together. “We see so much progress,” Marc shares. “When you’re in research, you feel things moving, and you see the finish line in the distance. It’s great to be part of the process pushing us closer.” Watch more of Karen and Marc’s story at michaeljfox.org/ParticipantPack. 12 Navigating Clinical Trials: A Guide for Parkinson’s Patients and Families