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Center for Inherited Heart Diseases

Inherited heart diseases, commonly known as genetic heart disease, refer to heart conditions affecting more than one person in a single family. The Johns Hopkins Heart and Vascular Institute’s Center for Inherited Heart Diseases seeks to identify these familial diseases and slow their progression through preventative care. Our Center has continued the long-standing tradition of pioneering genetic breakthroughs in the field of cardiology at Johns Hopkins. Here you can receive specialized screening and consultation for several forms of genetic heart disease, including hypertrophic, restrictive, arrhythmogenic right ventricular, and dilated cardiomyopathies; inherited heart rhythm disorders such as LongQT and Brugada syndromes; familial cardiac amyloid; and other inherited cardiac conditions.

Inherited Conditions

Following the pattern of a cardiac problem in your family can help your physicians predict the likelihood of you or other family members having the same condition. Some inherited conditions include:

Family-Centered Care

Most inherited heart conditions can affect people at any age. In the Center for Inherited Heart Disease, we practice family-centered care. Our team focuses on care for all age groups. Our genetic counselors see patients of any age, and our team can connect individuals with expert care with our adult or pediatric practitioners. 

Meet Our Physicians

Leadership

Photo of Dr. Andreas S Barth, M.D., Ph.D.

Barth, Andreas S, M.D., Ph.D.

Assistant Professor of Medicine
 
Photo of Dr. Anne Margaret Murphy, M.D.

Murphy, Anne Margaret, M.D.

Professor of Pediatrics
Vice Chair for Basic and Translational Research, Department of Pediatrics
 

Pediatric Channelopathies/Sudden Death/ARVC

Photo of Dr. Jane Eleanor Crosson, M.D.

Crosson, Jane Eleanor, M.D.

Associate Professor of Pediatrics
Director, Pediatric Electrophysiology
Co-Director, Adult Congenital Heart Disease Program
 

Pediatric Heart Disease/Muscle Disease

Photo of Dr. William John Ravekes, M.D.

Ravekes, William John, M.D.

Associate Professor of Pediatrics
Medical Director for Pediatric Heart Transplant
 
Photo of Dr. William Reid Thompson, III, M.D.

Thompson, William Reid, M.D. III

Associate Professor of Pediatrics
 

Adult ARVC

Photo of Dr. Hugh Grosvenor Calkins, M.D.

Calkins, Hugh Grosvenor, M.D.

Professor of Medicine
Professor of Pediatrics
Director, Cardiac Arrhythmia Service
Director, Johns Hopkins ARVD Program
Director, Johns Hopkins Atrial Fibrillation Center
Director, Electrophysiology Laboratory
Director, Tilt Table Diagnostic Laboratory
 
Photo of Dr. Nisha Aggarwal Gilotra, M.D.

Gilotra, Nisha Aggarwal, M.D.

Assistant Professor of Medicine
Director, Heart Failure Bridge Clinic
 
Photo of Dr. Harikrishna Tandri, M.B.B.S., M.D.

Tandri, Harikrishna, M.B.B.S., M.D.

Associate Professor of Medicine
Co-Director, Arrhythmogenic Right Ventricular Dysplasia (ARVD) Program
 

Adult Channelopathies/VF

Photo of Dr. Hiroshi Ashikaga, M.D., Ph.D.

Ashikaga, Hiroshi, M.D., Ph.D.

Associate Professor of Medicine
 
Photo of Dr. Andreas S Barth, M.D., Ph.D.

Barth, Andreas S, M.D., Ph.D.

Assistant Professor of Medicine
 
 

Adult DCM/Familial CMP

Photo of Dr. Lili Ayala Barouch, M.D.

Barouch, Lili Ayala, M.D.

Associate Professor of Medicine
Director, Columbia Heart Failure Clinic
 
Photo of Dr. Edward Kevin Kasper, M.D.

Kasper, Edward Kevin, M.D.

Professor of Medicine
Director of Clinical Cardiology
E. Cowles Andrus Professor in Cardiology
 
Photo of Dr. Emmanouil Tampakakis, M.D.

Tampakakis, Emmanouil, M.D.

Instructor of Medicine
 

Adult Resistant Hypertension

Photo of Dr. Oscar Horacio Cingolani, M.D.

Cingolani, Oscar Horacio, M.D.

Assistant Professor of Medicine
Associate Director Coronary Care Unit
Director Hypertension Center
Osler Internal Medicine Faculty (Thayer Firm)
 

Adult HCM

Photo of Dr. Lili Ayala Barouch, M.D.

Barouch, Lili Ayala, M.D.

Associate Professor of Medicine
Director, Columbia Heart Failure Clinic
 
Photo of Dr. Edward Kevin Kasper, M.D.

Kasper, Edward Kevin, M.D.

Professor of Medicine
Director of Clinical Cardiology
E. Cowles Andrus Professor in Cardiology
 
Photo of Dr. Jose Alejandro Madrazo, M.D.

Madrazo, Jose Alejandro, M.D.

Assistant Professor of Medicine
 

Adult Lipid Disorders

Photo of Dr. Steven Richard Jones, M.D.

Jones, Steven Richard, M.D.

Associate Professor of Medicine
Director, Inpatient Cardiology
 
Photo of Dr. Thorsten Martin Leucker, M.D., Ph.D.

Leucker, Thorsten Martin, M.D., Ph.D.

Assistant Professor of Medicine
Director of Basic and Translational Vascular Biology Research within the Ciccarone Center for the Prevention of Heart Disease
 
Photo of Dr. Seth Shay Martin, M.D., M.H.S.

Martin, Seth Shay, M.D., M.H.S.

Associate Professor of Medicine
Director, Advanced Lipid Disorders Program of the Ciccarone Center
 

Cardiac Genetics/ARVC Research

Photo of Dr. Cynthia Anne James, Ph.D.

James, Cynthia Anne, Ph.D.

Assistant Professor of Medicine
 
 

Genetic Counseling

Genetic testing has now become an important part of management and diagnosis in inherited heart conditions. Precision medicine is continuing to offer the promise of individualized management for every patient based on the specifics of their condition. The Johns Hopkins Center for Inherited Heart Diseases can provide you with the appropriate counseling on the options, benefits, and potential risks of genetic tests. Genetic counseling is critical for understanding how genetic information may impact your future health, as well as your family. It is also recommended  by most cardiac professional societies. 

Our genetic counselors are trained to carefully identify this information and guide you in making a decision about how to use this knowledge, if necessary. 

Meet Our Genetic Counselors

Brittney Murray, M.S., C.G.C.

Emily Brown, M.G.C., C.G.C.

Rebecca McClellan, M.G.C., C.G.C.

When you first come to the Center for Inherited Heart Disease, we will discuss your family’s medical history and you will meet with a genetic counselor and cardiologist. You may need some tests, such as an echocardiogram, electrocardiogram or cardiac MRI for us to fully evaluate your condition. After counseling and testing, your cardiologist and genetic counselor will share their findings with you and provide recommendations for any follow-up care.

Visit the National Society of Genetics Counselor's website to  learn more about genetic counseling and what you can expect from your visit. 

The goal of our Center is to find the cause of an inherited heart condition, and to target treatments that are specific for these problems. We also provide counseling to family members, and we work with other members of the cardiology community to better understand inherited forms of cardiovascular disease.

What to Expect on Your First Visit

We will require records of prior medical care and studies in anticipation of your visit for review. We will determine if any additional testing is needed after review of your records. These tests will be arranged after review of your records at the time an appointment is scheduled. Your appointment will be scheduled with our coordinator at (410) 502-2578.

Frequently Asked Questions

When is the clinic open?

Our team is available for consultations during normal business hours, but clinic availability will depend on the practitioners deemed most appropriate for your care. Most of the practitioners have clinic availability only on specific days.

What is a genetic counseling visit?

We believe that a genetic counselor is a key member of the multidisciplinary team caring for patients with inherited heart disease. We also feel (as is recommended by professional cardiology guidelines) that generic counseling is necessary whenever performing genetic testing to make sure that the patient understands the benefits, limitations, and outcomes of genetic testing. Genetic testing is not a mandatory part of the visit and you and your genetic counselor may decide together that genetic testing is not something you want to pursue at this time. However, if you do elect to proceed, genetic testing in many cases can be sent at the time of your genetic counseling visit.

Is fasting required for your clinic visit?

Unless you are specifically instructed, genetic testing does not require fasting.

What treatments are available?

There may be many different treatments available based on the specifics of your medical condition and genetic basis. This will be discussed with you and your cardiologist during your visit.

Will my insurance cover any costs associated with my visit?

Health insurance typically pays for genetic counseling and genetic testing when it is recommended by a doctor. However, it is important to check with your insurance company to verify coverage. Insurance companies have different policies and may cover some tests and not others. Some cover genetic counseling and testing under specific circumstances, or insist that certain requirements are met before the agree to cover it. As with most health care provider appointments and tests, you may need to pay for some of the costs. Our cooridnator will work with you to make sure that your appointments are billable to your insurance.

Do I need a referral form?

For many instances, you may not need a referral. Our coordinator will let you know if your insurance requires a referral.

Will I be part of medical research?

Your visit to the Center for Inherited Heart Diseases is part of your clincal care, but our team is often involved in medical research to advance the understanding of these rare conditions as well. If you are eligible for any specific ongoing research studies they will be presented to you during your visit and you will be given the option to volunteer or participate. Please feel free to call us to discuss specific research opportunities if you are interested.

 

Schedule an Appointment

To schedule an appointment with the Center for Inherited Heart Disease, please call (410) 502-2578.