The Michael J. Fox Foundation for Parkinson’s Research (MJFF) recently conducted a survey of nearly 1,000 Parkinson's disease patients about clinical research participation attitudes.
The survey revealed that while the Parkinson's community has a high interest in contributing to finding a cure for Parkinson's, only 25% has initiated a conversation about trials with their doctor. Furthermore, 85% of patients wish they were better informed about trials and 61% said they don’t know where to find information about participating in clinical trials.
The survey also asked questions about online resources and tools. More than three quarters of Parkinson's patients (77%) wish there were a secure and anonymous online tool to help them locate clinical trials in their area.
The survey also revealed critical misperceptions about Parkinson's clinical research. Roughly 39% of patients surveyed mistakenly believe that clinical trials for Parkinson's disease have little trouble recruiting volunteers. Most concerns due to not participating in clinical trials are personal safety concern (68%) and the belief that volunteers are “guinea pigs” (58%).
Survey participants are also unaware that many clinical trials study the use of singing (88%) or activities like playing Nintendo Wii (85%) as interventions with potential to improve day-to-day management of their disease.
Overall, the survey revealed a lack of awareness of the range of research being conducted and the safety of clinical trials.