Study Rationale: Biomarkers are tests that measure something about a person’s health. Research studies often include biomarkers, but research participants may or may not receive the results. This study will ask people living with Lewy body diseases (like Parkinson’s disease) and caregivers their opinions about receiving research test results. The study will ask opinions about receiving research test results that relate to a person’s known diagnosis, like Parkinson disease. It will also ask opinions about receiving research test results for diseases that a person might not know that they have, like Alzheimer’s disease.
Hypothesis: We expect that people living with Lewy body diseases and caregivers will have different reasons for wanting or not wanting research test results.
Study Design: First, we will host focus groups with people living with different Lewy body diseases and with caregivers. We will ask for participants’ opinions about receiving different kinds of research test results. Using what we learn in the focus groups, we will develop and share a survey asking people living with Lewy body diseases and caregivers about their opinions about receiving different kinds of research test results. This will let us get opinions from a broader group of people. We will then develop tools to help clinicians and researchers share research test results well. We will do a pilot study of sharing test results in a research study that is already ongoing. Finally, we will create a video about research test results with information to help people decide if they want to receive their own results if they are in a research study doing biomarker testing.
Impact on Diagnosis/Treatment of Parkinson’s disease: The results of this research study will help people with Parkinson’s disease know the pros and cons of receiving research test results. The results may also help clinicians and researchers do a better job of sharing expected and unexpected test results.
Next Steps for Development: The materials developed through this study can help researchers share test results with participants. Research can then study how people respond to learning expected and unexpected test results.