6 UK research priorities in cardiomyopathy: results from the James Lind Alliance priority setting partnership

Introduction The James Lind Alliance (JLA) method is designed to raise awareness of research questions which are of direct relevance and potential benefit to patients and the clinicians who treat them. A JLA priority setting partnership (PSP) was established in February 2023 to determine research priorities in cardiomyopathy. Methods The systematic JLA method was used for ranking and setting research priorities (figure 1). A survey was designed for UK-based people, aged 16+ affected by cardiomyopathy, their loved ones, carers and health professionals. Between 9th June and 31st July 2023 the initial survey asked three questions, 1) What question(s) do you have about cardiomyopathy treatment/care for people with, or at genetic risk of, cardiomyopathy that you would like answered by research? 2) What question(s) do you have about the impacts of cardiomyopathy on day-to-day living that you would like answered by research? c) What other question(s) do you have about anything else to do with cardiomyopathy that you would like answered by research? Results The first survey had 1020 respondents of whom 65% had cardiomyopathy. Following thematic analysis and evidence review, over 2000 initial questions and statements were organised into 63 potential research questions. The second survey had 660 respondents and resulted in a shortlist of 26 questions. These questions were prioritised in a face-to-face one-day workshop on 2nd Feb 2024. The top 10 priorities are shown in table 1. Conclusions The Cardiomyopathy PSP has agreed the top 10 research priorities in line with JLA Principles. Engaging stakeholders in setting research priorities ensures that funders are aware of what really matters to patients, carers and healthcare professionals. Conflict of Interest NIL