Background: Despite an urgent need for new medications, clinical trials in Parkinson's have a relatively low rate of success. Although many reasons have been proposed for this, the opinions of patients and scientists, the two principal stakeholders, have not been widely canvassed.
Objective: The objective of the present study was to establish the main barriers to clinical trials success in Parkinson's, as perceived by people with Parkinson's and those engaged in conducting clinical trials in Parkinson's.
Method: Three hundred and three people (303) with a connection to Parkinson's completed an online four-item questionnaire, directed towards discovering the barriers that interfere with the establishment of effective clinical trials.
Results: 87% of respondents were patients and their care partners and 11% were medical professionals involved with clinical research. In the survey, those involved in conducting research cited insufficient financial and administrative support as the biggest obstacles to carrying out effective clinical trials. For responders with Parkinson's, the principal barrier to their participation in medical research was fear of potential adverse consequences and misconceptions regarding the clinical trial system as a whole, issues rooted in a perceived lack of communication of relevant information between the research and patient communities.
Conclusions: Areas for future improvement as highlighted by this survey and debated at the Rallying to the Challenge meeting of people with Parkinson's (PwP) at the Van Andel Research Institute that followed included recommendations in the areas of communication, education, funding, recruitment and compliance.
Keywords: Clinical trial; barriers; management; patient engagement.