Children and Clinical Studies: The National Heart, Lung, and Blood Institute's New Multimedia Resource for Pediatric Research

Novel initiatives of the National Institutes of Health to support congenital heart disease research

“…This website invites children, families and healthcare providers to learn about paediatric clinical research through award-winning documentaries of parents, researchers and children sharing their experiences. This resource is used by research organizations, Institutional Review Boards and families around the world, is available in Spanish and addresses issues of concern to minority participants [10,11]. …”

Educating Parents About Pediatric Research

“…The goal has been to educate the public, and parents in particular, about children in research (Pemberton, Kaltman, & Pearson, 2009). This online program includes documentary videos featuring researchers, parents, and children sharing their clinical research experiences, children explaining general research concepts (including why clinical studies are important, difference between research and care, participant rights, common terms, saying no, and minority interests), didactic textual content (e.g., safety and ethical review), PDF resources, and other multimedia content.…”

“…Recognizing this gap, the Children and Clinical Studies (CaCS) program (childrenandclinicalstudies.org) was developed in 2008 by the New England Research Institutes with funding by the National Heart, Lung, and Blood Institute in collaboration with other National Institutes of Health Institutes and foundation partners. The goal was to educate the public, and parents in particular, about children in research (Pemberton, Kaltman, & Pearson, 2009). This online program includes documentary videos featuring researchers, parents, and children sharing their clinical research experiences, children explaining general research concepts (including why clinical studies are important, difference between research and care, participant rights, common terms, saying no, and minority interests), didactic textual content (e.g., safety and ethical review), PDF resources, and other multimedia content.…”

Consulting with children in the development of self‐efficacy and recall tools related to nutrition and physical activity

“…One of the most important shifts related to research with children was the realization that current health‐related interventions, including drugs, assessment instruments, and devices, were developed with and for adults, and then adapted for use with children either by decreasing the dose or simplifying language and/or including pictures. However, as the recent National Institutes of Health's initiative, No More Hand‐Me‐Down Research , reminds us, children are not little adults, and until we directly engage children in research using approaches that are developed with and for children, we will continue to treat children as little adults (National Institutes of Health, ; National Institutes of Health, National Heart, Lung, and Blood Institute, ; Pemberton, Kaltman, & Pearson, ). This article chronicles our efforts to develop an instrument with and for children—complete with insights, multiple iterations, and missteps along the way.…”