Parkinson's Clinical Trial Companion Navigating Clinical Trials - Page 35

Participating in Genetic Research What to Expect Both people with Parkinson’s disease (PD) and their loved ones can play a critical role in the pursuit of a PD cure by participating in genetic research. And everyone with PD, not only those with a genetic mutation, can benefit from the insights of genetic research. So it’s important to understand what genetic research entails, if and how it involves genetic testing, and what the benefits and risks are. Everyone Can Advance Genetic Research Genetic Research Versus Genetic Testing No matter whether you have Parkinson’s, a family member with PD or a Parkinson’s-associated genetic mutation — you can help push breakthroughs forward. By studying the genes of people with PD, their relatives and control volunteers, researchers learn about the genes linked to Parkinson’s, how they interact with other genes and environmental factors to cause (or protect against) disease, how they correlate with specific PD symptoms and progression, and how they could be modified or targeted to treat disease. By studying broad populations of people both with and without PD, researchers also can find as-yet undiscovered mutations associated with Parkinson’s. Participating in genetic research is different than simply getting genetic testing. In research, DNA samples from study participants are collected and analyzed to help answer a scientific question. Genetic testing carried out as part of a research study is not necessarily intended to provide you with personal medical information and, in some studies, you may not even learn your results. Each study has a protocol that specifies whether, and how, participants will learn the results of their genetic testing. The reasons why trials don’t share individuals’ data vary, but often it’s because this information does not directly impact medical care or other decision making. Chapter 3 — Genetics and Parkinson’s Research 33