The importance of patient engagement when promoting age-inclusive research

患者参与在促进年龄包容性研究中的重要性

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Abstract

Children and young people continue to face many barriers to actively participating in clinical research, despite the same research questions being just as applicable to them as their adult counterparts. Exclusion of paediatric populations from drug trials can result in a lack of timely, equitable access to disease modifying medications. In other circumstances, there is the risk of extrapolating evidence from adult populations that may not meet the needs of a young population. In this brief report, we highlight the importance of directly involving children and young people when evaluating inclusion in research studies. This is illustrated by our service evaluation investigating current paediatric haemodialysis practices and opinions, and how these relate to a UK based clinical trial called the 'NightLife study' that is being conducted in adult haemodialysis centres. We discuss how age-inclusive approaches are aiming to change the paediatric clinical research landscape going forward, using research initiatives built on the principles of equity and inclusivity.

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