Children and their caregivers help answer critical questions about how to best treat and manage conditions associated with child disability by participating in clinical trials. A critical knowledge gap that remains is how to best communicate the trial’s results with children and their families, whose participation in trials makes them possible. It is of ethical importance to share trial results with them so they can access, understand, and use the medical information that they themselves helped generate. However, in practice they rarely receive any information about how the trial went or what the results showed.
Efforts in Canada are ongoing to increase family-centered clinical trial design and conduct for pediatric clinical trials. In this project, we will develop a freely accessible bilingual trial results communication tool (“CommuniKIDS”) with youth and families impacted by different forms of child disability, in collaboration with Clinical Trials Ontario and INFORM RARE. This research project will determine what their specific informational needs and preferences are for receiving trial results, including what to communicate (i.e., content) as well as by whom, how, and when this information should be communicated. We will hold workshops with youth and families with lived experience of rare genetic disorders associated with child disability to answer these questions and to co-develop guidance and templates for researchers to use for sharing pediatric trial results with participants. We will also obtain and incorporate feedback on CommuniKIDS from trialists, making sure CommuniKIDS is acceptable for use by researchers and research ethics boards.
CommuniKIDS is funded by The CHILD-BRIGHT Knowledge Translation (KT) Innovation Incubator grant competition.
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