A UK national patient survey of attitudes towards aspects of novel clinical trial design in pulmonary hypertension

<b>Background</b> Clinical trial methodology in pulmonary hypertension (PH) is evolving, including the use of digital technology, decentralisation and novel endpoints (Weatherald, J. et al. Lancet 2022; 400:1884-98). The success of this relies on patient engagement and understanding the patient perspective. <b>Aim:</b> To understand the perspectives of patients with PH on these areas of trial design: · Patient reported outcome measures · Drug selection · Digital technology · Participation · Hospital visits · Remote monitoring · 6-Minute Walk Test <b>Methods:</b> A widely-disseminated national online patient survey was co-designed and tested with patients, the Pulmonary Hypertension Association UK and clinical researchers. 61 questions were mapped to a draft protocol with a view to informing trial design. <b>Results:</b> 112 patients responded. A matrix of demographics against key domains is shown in the summary figure. 22% have participated in a drug trial. Of whom, 74% had a positive experience and 94% would participate again. High proportions of patients are enthusiastic about digital technology in clinical trials. <b>Conclusions:</b> The results have directly informed the methodology of two clinical trials due to open in 2023 and remain an open resource via PHA-UK. Patients are keen to engage with research including via digital means. Understanding patient perspectives and co-designing clinical research is key to their experience and recruitment. [figure1]