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 developed 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 (CTO) and INFORM RARE. This research project determined 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 held workshops with youth and families with lived experience 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 also obtained and incorporated feedback on CommuniKIDS from trialists, making sure CommuniKIDS is acceptable for use by researchers and research ethics boards.
The CommuniKIDS template and tip sheet is available on the CTO Plain Language Result Summaries website.
The development of CommuniKIDS was funded by a knowledge translation grant from the CHILD-BRIGHT Network to Dr. Nancy Butcher in partnership and supported by Clinical Trials Ontario, the INFORM-RARE Network, and the EnRICH Research Group (The Hospital for Sick Children).
To learn more about how CommuniKIDS was developed, check out our poster with video here.
Logo designed by Alyssa Chee-A-Tow
Updated May 2022