Services for hypertrophic cardiomyopathy

A pacemaker may be recommended to stimulate a faster heart rate when the heart beats too slow and the problem can't be fixed with other treatments. An implantable cardioverter defibrillator (ICD) combines the steady regulation of a pacemaker with the ability to shock the heart back into rhythm. It is used to treat congestive heart failure as well as arrhythmia, which can lead to sudden cardiac arrest. Cardiac arrhythmias may also be treated with antiarrhythmic medications or catheter ablation procedures.

Advanced imaging of the heart is a crucial part of quality patient care. Spectrum Health offers state-of-the-art technology and a team of highly-skilled, board-certified cardiologists to provide the highest quality diagnostic and imaging services possible, including echocardiography, stress echocardiography, and cardiac MRI with specific HCM imaging protocols.

Spectrum Health offers the only full-service advanced heart failure and ventricular assist device (VAD) program in the region. The Spectrum Health Richard DeVos Heart and Lung Transplant Program brings outstanding transplant surgeons to you for life-saving heart transplant when all other options have been exhausted.

Our dedicated team connects patients and their families to necessary resources and programs in the community. They will help patients understand the social complexities of their medical situation and the impact that it has on their life.

Only a small number of patients require surgical myectomy. If necessary Spectrum Health has an experienced and effective surgical program to alleviate obstruction and symptoms for HCM patients.

Our HCM team reviews multiple non-invasive clinical markers to help determine if an HCM patient is at high risk for the development of ventricular arrhythmias (abnormal heartbeats which can cause loss of consciousness or sudden cardiac death). If you are found to be high risk, we will discuss with you implanting a cardioverter defibrillator (ICD), designed to sense and automatically terminate these arrhythmias. This has proven highly effective at re-establishing normal heart rhythm, and preventing sudden cardiac death events.

All first degree relatives of patients with hypertrophic cardiomyopathy should undergo screening with or without genetic testing. As part of their screening, we perform a detailed pedigree analysis, ECG, and echocardiogram. We educate patients and their families about their disease and treatment options.

HCM is the most common single-gene inherited cardiovascular condition. Being diagnosed with HCM may place one’s close relatives at increased risk to develop this condition as well. HCM visits include discussion of the clinical benefits and limitations of genetic testing. A genetic counseling visit is important prior to deciding whether or not to have a genetic test. During this visit discussion will include concerns regarding cost, insurance coverage, or possible genetic discrimination, as well as the laws that are in place that would protect this from occurring.

There are many aspects of HCM that could be better understood by the medical community. Our multidisciplinary team has created a very robust research registry that they will use to study aspects of HCM such as genetics, imaging, risk prediction, and beyond. This registry is completely voluntary and patients choose whether or not participation in the research is right for them. Through this registry, our HCM team is hopeful that we will be able to improve care and outcomes for not only our patients, but also those around the world.

As a Hypertrophic Cardiomyopathy Center of Excellence, part of our mission is to provide our patients access to new and experimental therapies as they become available, and to study HCM in our patient population in hopes of gaining knowledge that will benefit patients in the future. Our active areas of research are described below. For more information, please call our HCM specialized nurses at 616.885.5355 or refer to the Spectrum Health research opportunities page for more information.

Principal Investigator: David Fermin, MD 

This research registry (database) is open to all our HCM patients. We believe our patients and families in West Michigan have a unique story to tell as we follow genetics, treatment patterns and the effects of living with HCM on our patients. All patient data are deidentified (anonymous) per Institutional Review Board (IRB) policy. This registry was created in collaboration with other major HCM Centers, which will make it possible to participate in large-scale national and international HCM population research.

Principal Investigator (Spectrum Health Site): David Fermin, MD 

Mavacamten is one of the first drugs designed specifically to treat symptomatic obstructive HCM. EXPLORER-HCM is an industry-sponsored Phase 3 randomized, double-blind, placebo-controlled clinical trial to determine the effectiveness of mavacamten in improving symptoms and exercise capacity in patients with obstructive HCM. Mavacamten has passed through the initial Phase 1 and 2 trials, which evaluate safety and efficacy in smaller numbers of patients.

Principal Investigator (Spectrum Health Site): Alfred Albano, MD 

In collaboration with Tufts University (a leading HCM Center), this is a retrospective multicenter study of HCM patients with ICDs (implantable cardioverter-defibrillators) for the primary prevention of sudden cardiac death (SCD). The purpose of this study is to assess how well the newer European Society of Cardiology (ESC) risk score measures up to using the conventional risk markers in the 2011 American College of Cardiology/American Heart Association (ACC/AHA) guidelines for the purpose of identifying patients at high risk for SCD who may benefit most from ICDs. The goal of this initiative will be to resolve, with a large multicenter effort, ongoing questions over risk stratification in HCM.

The symptoms of hypertrophic cardiomyopathy are most often manageable with medications, along with very important lifestyle changes. Common heart medications are used to improve symptoms including shortness of breath, chest pain, lightheadedness and heart palpitations, but some can also be essential in preventing life-threatening episodes. It is important to take your medicines exactly as prescribed, and work with your doctor on both lifestyle and medicine changes.

A diagnostic cardiac catheterization will be performed prior to patients needing a myectomy to evaluate for coronary artery disease. Direct pressure and detailed gradient measurements are taken to assist in care and treatment plans.

An ambulatory monitor can detect abnormal rhythms of the upper and lower chambers of your heart. These can evaluate for any potentially asymptomatic, abnormal, or life threatening electrical heart rhythms.

The Congenital Heart Center at Helen DeVos Children’s Hospital provides expert cardiology care for children throughout Michigan. Children with hypertrophic cardiomyopathy can have different manifestations, some presenting as early as infancy. Spectrum Health offers comprehensive care for these children, as well as screening for children with family members affected with hypertrophic cardiomyopathy.