Factors influencing clinical trial participation for adult and pediatric patients with cystic fibrosis

Patient engagement and satisfaction with early phase cell therapy clinical trials at a tertiary inflammatory bowel disease center

“…Patient recruitment and retention is heavily influenced by the balance between patient preferences and trial design ( Lee et al., 2021 ; Nguyen et al., 2022 ). While this study did not directly measure patient preferences regarding pre-trial design, it does give retrospective insight into the factors which were most and least effective to patients’ experiences and, thus, can help to inform future trial design.…”

Future therapies for cystic fibrosis

“…The first step is to better understand what motivates people with CF to enrol into and remain in trials. A recent survey from Canada 122 , at a time when ~50% of the CF population had access to older modulator drugs but not yet to ETI, reported that adults with CF, or parents of children with CF, were most interested in trials that targeted the root or underlying cause of CF, inflammation and infection. In the UK, feedback from workshops facilitated by the CF Trust has revealed that pwCF are motivated to take part in research not only by the possibility of personal benefit but also in advancing treatment for others with CF and driving development of future options.…”