Hypertrophic cardiomyopathy (HCM) is the most common genetic heart disease, the most frequent cause of sudden cardiac death in the young (including trained athletes), and can be responsible for heart failure symptoms at any age. For more than 20 years, Barry J. Maron, MD, an international expert on HCM, directed the unique HCM Center at the Minneapolis Heart Institute Foundation (MHIF).
The HCM Center has led in patient care, research and teaching related to this complex disease. As the first of its kind, it is a model in delivering patient care that involves the diverse cardiovascular disciplines of electrophysiology, interventional cardiology, echocardiography and cardiovascular magnetic resonance imaging, heart failure and transplant cardiology and surgery, genetic testing and family counseling provided through strong clinical nursing. The large HCM Center cohort includes 1,500 patients from all 50 states and 25 foreign countries whose ages range from 2 to 95 years.
The Center operates on the principle that all potential complications of HCM can be effectively treated, providing the opportunity for normal life expectancy. This focused approach has substantially improved patient outcomes. Targeted strategies include using the implantable defibrillator (ICD) to prevent sudden death (the first systematic program of its kind) and surgical myectomy (in collaboration with the Mayo Clinic) to reverse heart failure, enhancing quality of life and the opportunity for normal longevity. By virtue of MHIF’s sudden death prevention initiative, 250 young patients have received life-saving ICD therapy and survive to the present.
The HCM Center, in collaboration with Minneapolis Heart Institute®’s Center for Cardiovascular Imaging, has made major advances in noninvasive diagnosis of this disease, including identifying high-risk patients with HCM whose disease might otherwise be undetected. Clinical research is a major impetus of the HCM Center, which has contributed 525 papers to the literature over 20 years that describe the diagnosis, natural history and treatment-related outcomes of patients with this complex genetic disease. This systematic series of investigations has measurably changed perceptions, management, decision-making and outcome of HCM.