To take the most comprehensive approach to care by tapping into the knowledge of experts from a wide range of fields to work with patients on prevention, early diagnosis, and disease management.
There remains significant uncertainty about which family member will develop arrhythmogenic right ventricular cardiomyopathy (ARVC) and how best to approach longitudinal screening of at-risk family members. Our Center goals are directed toward personalization of risk assessment and management for both patients and at-risk family members.
Development and validation of models for individualized ventricular arrhythmia risk prediction
Work towards an evidence base for early detection, family screening, and family management
Achieving a better understanding of the underlying causes and the progression of ARVC enables us to develop the best approaches to diagnose and manage the disease. Research partnerships are critical components of building our knowledge. Through collaboration with ARVC experts around the world, we are better able to understand the risk factors for this specific kind of heart disease, and to develop the most targeted treatment options.
Jasonee was diagnosed with Arrythmogenic Right Ventricular Dysplasia/Cardiomyopathy (ARVD/C) in 2012. After a sudden dramatic cardiac event, a series of doctors in her hometown struggled to identify a diagnosis and recommend solutions. She found experts at Johns Hopkins, who quickly determined her condition was a rare familial disorder that causes sudden cardiac death in young, apparently healthy individuals. Now receiving proper treatment and observation, Jasonee and her family feel reassured and confident that this condition is manageable and under control, allowing her to live a full and rewarding life with her young son.