UC Irvine

To achieve the national agenda of developing improved therapies for Alzheimer's disease (AD), greater community engagement and public trust are needed. Ensuring satisfaction among those enrolling in studies is one means to facilitate these goals. We performed telephone interviews to assess satisfaction with the disclosure of study results among thirteen individuals who were enrolled as participants or study partners in a Phase 3 clinical trial for mild AD. Most participants were at least somewhat satisfied with the manner of disclosure. Two participants were dissatisfied; these participants learned results through the media. Most participants indicated that their preference would have been to learn results through the site study team. Ten participants indicated that they wished to learn randomization assignment and several indicated a desire to learn more details about study data. Future trials should undertake a systematic approach to disclosing study results and assessing participant satisfaction with the process.