Research methodology
A research study was designed to understand perceptions and attitudes towards clinical research, in addition to the experiences and barriers to a better engagement. Rare Patient Voice provided access to its database of individuals in the U.S. who were either actual or potential participants in clinical trials.
A total of 1,800 people were contacted via email in early May 2021, and invited to participate in an online survey that gathered opinions on participation or intent to participate in clinical trials, with the benefit of letting their voice be heard by the very pharmaceutical companies that sponsor clinical trials. To incentivize participation, email recipients had the option of entering a drawing for one of ten $100 Amazon gift cards upon completion of the survey.
This report presents the survey results. Grateful acknowledgments are extended to all study participants for their valuable contribution to the research.
All percentages have been rounded to the nearest whole number.
Percentages in some charts exceed 100% due to respondents being able to select multiple choices.
Respondents have been quoted verbatim, but anonymously, to preserve confidentiality.