Abstract
Despite patient and public involvement (PPI) in paediatric rare disease research being a challenge, PPI is strongly advocated for clinical research. PPI provides the opportunity for young people to support research for the future of their healthcare and improve their own understanding of their health condition, thus improving health outcomes. The aim of this child-parent dyad survey was to investigate the understanding and preferences of clinical research in 26 young people affected with childhood Interstitial Lung Disease (chILD) (age 6 to 17) and their parents. The survey results captured young people’s understanding of informed consent/assent and confirmed young people and their parents are the main decision-makers in their undertaking research. For clinical research acceptability, parents were more open for their child to participate in clinical research than young people. Parents expressed less preference for their child to participate in research that involved untested medicines and surgery, whereas young people expressed less preference to undertake research that involved untested medicines, surgery, and venepuncture. These novel findings indicate that the survey designed for this study effectively captured young people’s opinions in an online non-clinical setting and found a potential disconnect between the young person’s needs and opinions and parents’ preferences of clinical research. The development of chILD research education and a young person forum is recommended to build and foster clinician/researcher relationships. Ultimately, this will allow for building stronger PPI links and improved chILD clinical research.