Assessing the Unmet Health Related Needs of Inheritable Arrhythmogenic Cardiomyopathy

As part of the GEREMY project (https://eupati.short.gy/GEREMY ), this webinar focuses on a study that aims to understand the unmet health-related needs of people living with inherited arrhythmogenic cardiomyopathy, a rare genetic heart disease that can lead to serious arrhythmias and sudden cardiac death. Beyond the physical impact of the condition, many patients face challenges related to their emotional well-being, access to appropriate healthcare, daily functioning, family life and work.

Understanding these needs is essential to ensure that new treatments, such as gene therapies, are developed with patients’ real-life experiences in mind. To explore this, KULeuven researchers conducted a literature review and designed a comprehensive patient survey, distributed in Dutch, French, and English to individuals diagnosed at UZ Leuven and UMC Utrecht. The survey includes 71 questions covering medical, psychological, and social aspects of living with the condition. This marks the first phase of the UR-HEART study, aiming to identify the specific disease and treatment factors that shape patients’ needs and their willingness to accept trade-offs between potential side effects and the expected benefits of current treatments or future gene therapies.