Overview
Inherited arrhythmogenic cardiomyopathy (also called arrhythmogenic right ventricular cardiomyopathy or ARVC, and sometimes arrhythmogenic right ventricular dysplasia or ARVD) is a rare heart muscle disease passed down through families. In this condition, the normal heart muscle cells are gradually replaced by fatty or fibrous (scar-like) tissue. This mainly affects the right side of the heart, though both sides can be involved. Over time, this change in the heart muscle makes it harder for the heart to beat in a normal, steady rhythm. The most common problems caused by this disease are irregular heartbeats (arrhythmias), which can range from mild palpitations to life-threatening rhythms. Some people feel their heart racing or fluttering, especially during exercise. Others may faint suddenly or feel very short of breath. In serious cases, the heart can go into a dangerous rhythm called ventricular fibrillation, which can cause sudden cardiac arrest. This is one of the leading causes of sudden death in young athletes. Treatment focuses on reducing the risk of dangerous heart rhythms and protecting heart function. Options include medications to control heart rhythm, lifestyle changes such as avoiding intense exercise, and devices like an implantable cardioverter-defibrillator (ICD) that can shock the heart back into a normal rhythm if needed. There is currently no cure, but with proper management many people live full lives. Regular monitoring by a heart specialist is essential.
Also known as:
Key symptoms:
Heart palpitations (feeling the heart racing, fluttering, or pounding)Fainting or near-fainting, especially during or after exerciseShortness of breath during physical activityDizziness or lightheadednessChest pain or discomfortFatigue that is out of proportion to activity levelSwelling in the legs or ankles (in advanced disease)Sudden cardiac arrest (in severe cases)Irregular heartbeat detected on a heart monitorReduced ability to exercise without symptoms
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
10 eventsShanghai Jiao Tong University School of Medicine — PHASE1, PHASE2
Centro Cardiologico Monzino — PHASE2
Scientific Institute San Raffaele
National Cancer Centre, Singapore — PHASE1
Roderick Tung — PHASE4
University Hospital Bispebjerg and Frederiksberg — NA
First Affiliated Hospital Xi'an Jiaotong University
Lexeo Therapeutics
Rocket Pharmaceuticals Inc. — PHASE1
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Inherited arrhythmogenic cardiomyopathy.
9 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Rare Disease Specialist
Rare Disease Specialist
Rare Disease Specialist
Treatment Centers
8 centersMayo Clinic
📍 Jacksonville, Florida
University of California San Francisco
📍 San Francisco, California
Medical University of South Carolina
📍 Charleston, South Carolina
Stanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
Travel Grants
No travel grants are currently matched to Inherited arrhythmogenic cardiomyopathy.
Community
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Start the conversation →Latest news about Inherited arrhythmogenic cardiomyopathy
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Questions for your doctor
Bring these to your next appointment
- Q1.Do I need an ICD, and what are the risks and benefits for my specific situation?,Which types of exercise or sports are safe for me, and which should I completely avoid?,Should my family members be tested, and how do we arrange that?,What warning signs should prompt me to go to the emergency room immediately?,Are there any clinical trials or new treatments I should know about?,How often do I need follow-up appointments and what tests will be repeated over time?,What does my genetic test result mean for my children or siblings?
Common questions about Inherited arrhythmogenic cardiomyopathy
What is Inherited arrhythmogenic cardiomyopathy?
Inherited arrhythmogenic cardiomyopathy (also called arrhythmogenic right ventricular cardiomyopathy or ARVC, and sometimes arrhythmogenic right ventricular dysplasia or ARVD) is a rare heart muscle disease passed down through families. In this condition, the normal heart muscle cells are gradually replaced by fatty or fibrous (scar-like) tissue. This mainly affects the right side of the heart, though both sides can be involved. Over time, this change in the heart muscle makes it harder for the heart to beat in a normal, steady rhythm. The most common problems caused by this disease are irreg
How is Inherited arrhythmogenic cardiomyopathy inherited?
Inherited arrhythmogenic cardiomyopathy follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Inherited arrhythmogenic cardiomyopathy typically begin?
Typical onset of Inherited arrhythmogenic cardiomyopathy is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Inherited arrhythmogenic cardiomyopathy?
Yes — 9 recruiting clinical trials are currently listed for Inherited arrhythmogenic cardiomyopathy on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Inherited arrhythmogenic cardiomyopathy?
25 specialists and care centers treating Inherited arrhythmogenic cardiomyopathy are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.