AICARM fully supports the guiding principles of the Global Heart Hub (GHH), the global alliance of patient organizations, for patient involvement and engagement in cardiomyopathy research. In extreme synthesis (an in-depth analysis will follow in the next issues) these guiding principles are: inclusiveness and emancipation, responsibility, transparency, collaboration, communication and impact.
The GHH Cardiomyopathy Patient Council believes that the perspective of people with personal experience of cardiomyopathy and the impact it can have should inform all stages of the research process on these principles to lead to better outcomes for people with this condition. For this reason, the community of patients with cardiomyopathies will support those research projects in which researchers agree to respect them.
To find out more about the Global Heart Hub follow this link: Global Heart Hub.