Researchers are increasingly asking an important question: when someone takes part in a research study, should they be offered the option to receive their individual results? For people living with Alzheimer's disease, this question has been studied quite a bit in recent years. But for people living with Parkinson's disease and dementia with Lewy bodies (DLB), almost no research has explored what patients and care partners actually want — or how researchers should approach the conversation if research participants do want to know their research results.
New research into this question is being led by Melissa J. Armstrong, MD, MSc, FAAN, and Hannah Fechtel Jury, MPH, at the University of Florida's Dorothy Mangurian Clinical-Research Headquarters for Lewy Body Dementia — one of the Lewy Body Dementia Association’s (LBDA) Research Centers of Excellence. With funding from The Michael J. Fox Foundation and with support from LBDA, the team is working to understand the preferences of people with Parkinson’s or DLB and their care partners. Building on findings from an earlier set of focus groups, the team has developed a new national survey to ask people living with Parkinson's disease or dementia with Lewy bodies — and their care partners — how they feel about receiving research results.
Why does this matter?
Many research studies use biomarkers — tests like brain scans, spinal fluid tests, or skin biopsies — to look for signs of disease in the brain. Some of these tests look for the alpha-synuclein protein linked to Parkinson's disease and DLB. Others look for signs of Alzheimer's disease changes, which turn out to be surprisingly common in people with Lewy body disease: research suggests that up to 60–70% of people with DLB, and roughly a third of people with Parkinson's disease dementia, also show some Alzheimer's-related changes on brain scans.
But right now, there's no agreed-upon standard for whether or how researchers should share these kinds of results with participants. Should everyone be offered their results? What if the results point to a second disease process a person wasn't expecting? This survey is designed to help answer questions like these, by giving the Lewy body dementia (LBD) community a direct voice in shaping future research practice.
What will the survey ask?
The survey takes about 10 minutes to complete. It's anonymous, voluntary, unpaid, and confidential — the survey will not ask for your name or any other identifying information, and your individual responses will not be shared. After a brief introduction explaining what biomarkers are and how they're used in research, participants will be asked how they think they would feel about receiving different types of research results — both alpha-synuclein results, which relate to a Parkinson's or DLB diagnosis, and Alzheimer's-related results, which may or may not apply to a given individual. The survey also asks about the reasons someone might want — or might not want — to know their results, since those reasons can differ a great deal from person to person.
Who can take part?
The survey is open to:
- People living with Parkinson's disease (with or without memory or thinking changes)
- People living with dementia with Lewy bodies
- Care partners or caregivers of someone living with either condition
Participants must be 18 years of age or older.
What will happen after the survey is complete?
The goal of the research team is that the results of the survey will help shape how research teams around the country approach the return of results for people living with Lewy body disease. Once complete, results from this survey will be shared with the community by The Michael J. Fox Foundation and LBDA and are expected to be published in a medical journal. Only group-level survey results will be shared, not individually identifiable responses.
How can I take part?
If you are interested in learning more about the survey, and potentially responding to the survey, please visit this study page: https://ufl.qualtrics.com/jfe/form/SV_79Zj2JDdnvgnYBo
