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  1. Supporting positive experiences and sustained participation in clinical trials: looking beyond information provision.Kate Gillies & Vikki A. Entwistle - 2012 - Journal of Medical Ethics 38 (12):751-756.
    Recruitment processes for clinical trials are governed by guidelines and regulatory systems intended to ensure participation is informed and voluntary. Although the guidelines and systems provide some protection to potential participants, current recruitment processes often result in limited understanding and experiences of inadequate decision support. Many trials also have high drop-out rates among participants, which are ethically troubling because they can be indicative of poor experiences and they limit the usefulness of the knowledge the trials were designed to generate. Drawing (...)
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  • Young People's Experiences of Participation in Clinical Trials: Reasons for Taking Part.Malou Luchtenberg, Els Maeckelberghe, Louise Locock, Lesley Powell & A. A. Eduard Verhagen - 2015 - American Journal of Bioethics 15 (11):3-13.
    Given the lack of knowledge about safety and efficacy of many treatments for children, pediatric clinical trials are important, but recruitment for pediatric research is difficult. Little is known about children's perspective on participating in trials. The purpose of this study was to understand the experiences and motivations of young people who took part in clinical trials. This is a qualitative interview study of 25 young people aged 10–23 who were invited to take part in clinical trials. Interviews were audio (...)
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