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International Children’s Advisory Network: A Multifaceted Approach to Patient Engagement in Pediatric Clinical Research

Published:September 21, 2017DOI:https://doi.org/10.1016/j.clinthera.2017.09.002

      Abstract

      Pediatric youth advisory groups were created to provide insight and guidance to the clinical research community. Such efforts have become a priority and parallel the demand for patient-centered health care. While steps are being made to integrate the patient voice into research, there remains a lack of pediatric-specific engagement in the development of pharmaceuticals and in clinical research. For example, a significant number of children are still treated with medications that are not approved for use in this age group, due to a lack of clinical trials involving younger children and neonates. The American Academy of Pediatrics noted that physicians are faced with an ethical dilemma, as they must frequently either not treat children with potentially beneficial medications or treat them with medications based on adult studies or anecdotal empirical experience in children. By improving the approach to pediatric study design, indications for pediatric-specific therapies can be developed. We describe a structured organization with empowered youth and parents who are beginning to play a key role in the research process that suggests ways to improve pediatric research and for innovative medical products to be more “child friendly” and usable. We will also describe how investigators can engage the International Children’s Advisory Network to obtain valuable youth perspectives on many aspects of clinical research and health care advocacy.

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