We recognise the central importance of involving patients and family members at every stage of the CureHeart study. We have partnered with Cardiomyopathy UK and, in the US, the SHaRe Cardiomyopathy Registry, and will continue to work with patients and families throughout the study. The partner charities and the patient panel will be represented on the Scientific Steering Committee.
Throughout the study, patient input will be sought for activities including:
- development of patient/participant recruitment strategies
- evaluation of attitudes to risk:benefit
- feedback on educational needs
- input to preparation of educational material
- development of strategies to report findings
To begin to understand patients’ views, we set up a panel drawn from members of Cardiomyopathy UK, which met in two sessions in summer 2020. We provided an overview of the planned research and asked for panel views on the acceptability of the research, as well as understanding key issues of importance for patients and families. A similar exercise was also carried out in parallel in the US.
We are currently running a survey to understand how our patient group might consider participation in a gene therapy trial in a range of different scenarios.