Clinical trial knowledge in families of children with epilepsy. A survey from a French Center for Rare Epilepsies.

Abstract

Clinical trials are essential to the development of innovative treatments. Many patients and families have limited knowledge of biomedical research. This study aimed to determine whether families of children with epilepsy were interested in learning more about biomedical research, what specific trial-related topics they wanted to know more about, and how they preferred to receive this information. An online survey was emailed to 29 partner associations and shared on the social networks of our Rare Epilepsy Reference Center. Of the 152 respondents, 63% knew about biomedical research, and 99% expressed interest in learning more. Topics of interest included how new anti-seizure medications are developed, the stages involved in drug approval, using placebos, randomization, and assessing treatment efficacy and side effects. Side effects and treatment efficacy attracted the most interest. While awareness of clinical trials is improving, there is still a need for a better understanding of critical concepts such as placebos, safety, and randomization. Social media, educational videos, and written resources could be practical tools for increasing knowledge and participation in clinical trials among patients with epilepsy and their families.