ArticleJournal of clinical and translational science2025
Introducing youth to clinical research: Development and pilot implementation of a children's activity book.
Article in Journal of clinical and translational science, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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4 authors.
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Abstract
Introduction: Children continue to be an underrepresented population in research and clinical trials due to difficulties encountered in recruitment, assenting, and retention processes. "Sofia Learns About Research" is a children's activity book that introduces youth to clinical research and basic elements of clinical trials. Methods: Development of the activity book began in 2016, with publication of the first paper version in 2017 and an online version adapted for computer and tablet users in 2019. In 2019, we developed internal review board-approved pre/post surveys with five statements (written at ≤ 3 Results: Despite delays in dissemination and outreach due to the COVID-19 pandemic, we obtained feedback from over 170 diverse persons across a spectrum of communities and community partners. After book exposure, more participants knew that both children and parents have to assent/consent and that participants can withdraw from a study at any time. Conclusions: The book is an important advocacy tool with a long-term aim of increasing children's knowledge and awareness about clinical research, ultimately leading to enhanced participation in clinical research and trials.
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