Grant: Prize - IHDCYH Talks - Videos

Opportunities for children and youth with rare diseases to participate in clinical trials are increasing as new treatments are developed and require evaluation. The Clinical Trials for Youth with Rare Diseases animated video was co-developed with youth advisors from INFORM RARE, a Canadian pediatric rare disease research network, in partnership with students from the University of Toronto. Our animation video is designed to simplify the complexities of clinical trials for a younger audience and describe them in a rare disease context. The youth advisors chose topics and messages that were meaningful to them as people with lived experience. The video describes distinct features of rare disease clinical trials and key questions to consider before joining a trial. We also describe the importance of autonomy and what youth can expect after joining a clinical trial. People with expertise in trial methods and ethics reviewed the final content to ensure accuracy.