P3-010: the largest global survey to date of adult perceptions of alzheimer's disease and clinical trial participation

Currently, more than 400 clinical trials in Alzheimer's disease (AD) are actively recruiting globally. Slow enrolment is a costly and common challenge faced by such studies. An estimated 80% of clinical trials across therapeutic areas including AD fail to meet recruitment goals on time. This global survey was conducted to assess public perceptions of AD, to gauge people's willingness to engage in clinical trials, and to identify any barriers to participating in AD research, with the goal of ultimately improving clinical trial enrolment. A large, online survey was conducted between July 25 and August 21, 2018. Respondents from Argentina, Canada, China, France, Germany, Italy, Japan, Spain, UK and the US were split equally between men and women and were recruited from a pool of people from a market-research database who had agreed to participate in survey research. The 34-question survey was conducted on behalf of Novartis, Amgen and Banner Alzheimer's Institute, sponsors of the Generation Program, in collaboration with Alzheimer's Disease International. Of the 10,095 participants (mean age 47.4) in this survey, 62% reported they are worried they may develop AD; 30% have thought about their potential risk of developing AD. Overall, 74% reported feeling there has not been enough progress in finding treatments for AD, 60% reported believing it is likely a cure will be developed in their lifetime, and 91% reported believing the solution to tackling diseases lies in medical research. In total, 79% reported willingness to participate in AD research; 75% are unaware how to participate; and 70% say it is “difficult to find out about the latest developments.” Overall, 80% are interested in knowing their potential risk for developing AD and 78% are willing to undergo genetic testing to do so. The survey highlighted people's concern over their risk of developing AD and their uncertainty about how to participate in AD research. Although clinical trial information is available online and from patient advocacy groups, this survey highlights a need to raise global awareness about these studies. Doing so could improve enrolment speed and prevent delays in the completion of critical clinical trials.