Saori Watanabe, Kaori Muto, Hideki Yui, et al. Awareness and perceptions of patient and public involvement in rare disease research in Japan: the role of patient advocacy groups and family members. Research Involvement and Engagement, 12(1), 2026.
In recent years, the importance of patient and public involvement (PPI), in which patients and members of the public are involved in the planning and implementation of medical research, has increasingly been recognized. In this study, we conducted an online survey of patients with rare diseases and family members through two nationwide patient advocacy groups and examined their awareness and perceptions of PPI in rare disease research.
