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The Great Need for a Cardiomyopathy Registry

There is currently no standard of care for cardiomyopathies. Treatment is done hospital by hospital, and there are limited options: invasive surgery, heart transplant or off-label use of heart drugs developed for other diseases. Not a whole lot of choice. A cardiomyopathy registry could help identify how patients fare on different treatments and could also support the development of novel therapies.

More and more is understood about the underlying genetics of Hypertrophic Cardiomyopathy and Dilated Cardiomyopathy.. The Sarcomeric Human Cardiomyopathy Registry (SHaRe) has been set up to accelerate this understanding.

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  The Great Need for a Cardiomyopathy Registry

There are currently medical registries that track diabetes, congestive heart failure, depression and asthma among others. Beyond a pediatric registry, until very recently, there hasn’t been a broader registry that tracks genetic cardiomyopathies, although these conditions affect more people than ALS, Muscular Dystrophy, and Multiple Sclerosis combined.

Alcoholic cardiomyopathy: Pathophysiologic insights

ACM is characterized by dilated left ventricle (LV), normal or reduced LV wall thickness, increased LV mass, and (in advanced stages) a reduced LV ejection fraction (< 40%). There are no specific immunohistochemical, immunological, biomarkers or other criteria for the diagnosis of ACM. Therefore, the diagnosis of ACM is often considered presumptive and is usually one of exclusion.

Dilated Cardiomyopathy

If you’ll search about DCM on Internet, you will see lot of information regarding causes, symptoms and treatments of DCM, but I do not want to get into those technicalities here, I only intend to share my experience about how I felt after knowing that I have DCM at such an early age and how I managed my mind and body.

Hypertrophic Cardiomyopathy

We hear it far too often: A young athlete collapses and dies, their youth and athleticism proving to be a cruel camouflage for a time bomb ticking within their seemingly-invincible body - Nancy Brown

Pediatric Cardiomyopathy

Most cases of pediatric cardiomyopathy occur for unknown reasons (idiopathic). Pediatric cardiomyopathy may be inherited or acquired. In recent years, investigators have determined that the cause of pediatric cardiomyopathy in many children may be disruption or changes (mutations) of certain genes. Researchers have discovered more than 300 different genetic mutations that may play a role in the development of different forms of cardiomyopathy.

Postpartum Cardiomyopathy

Postpartum cardiomyopathy, also known as peripartum cardiomyopathy (PPCM), is defined as new onset heart failure between the last month of pregnancy and 5 months post delivery with no determinable cause. Postpartum cardiomyopathy is a rare cause of heart failure. Its incidence and prevalence are highly variable depending on the race and geographic regions.

Takotsubo Cardiomyopathy

The proverbial broken heart threatens anyone brave enough to put his love and trust into someone else’s hands. It’s that emotional phenomenon your mother warned you about during infamous teen angst years. But what happens when a broken heart is more than just a flood of feelings and actually enters into a physical, sometimes life-threatening state?

Cardiomyopathy Association of Australia

Cardiomyopathy is a disease of the heart which can affect anyone at any time.

Cardiomyopathy UK

Our vision is for everyone affected by cardiomyopathy to lead long and fulfilling lives. We are a specialist charity providing information, advice and support to enable anyone affected by cardiomyopathy to live as full a life as possible. We raise awareness, improve diagnosis and management of the condition and we promote medical research.

Children's Cardiomyopathy Foundation

The Children's Cardiomyopathy Foundation (CCF) is a national, non-profit organization focused on pediatric cardiomyopathy, a chronic disease of the heart muscle. CCF is dedicated to accelerating the search for cures while improving diagnosis, treatment, and quality of life for children affected by cardiomyopathy.

Dilated Cardiomyopathy Research Project

We aim to advance our understanding of the genetics of dilated cardiomyopathy (DCM) by combining clinical and genetic information from a large number of families.

Huge Heart

Huge Heart is an organization dedicated to Cardiomyopathy- a weakening of the heart muscle. As of late Cardiomyopathy has been a common disease/condition amongst many athletes and young adults. It is a serious disease which can lead to complications such as sudden cardiac arrest. Our Mission is to provide a website to support people living with cardiomyopathy and to inform people about the impact that Cardiomyopathy has on health, lifestyle and longevity.

Scottish H.A.R.T.

We are a Recognised Scottish Charity involved in research into Cardiomyopathy and all heart diseases and we are currently raising funds to put a professionally manned screening unit on the road to test all young athletes and families at risk.

Share Registry

The goal of the Sarcomeric Human Cardiomyopathy Registry (SHaRe), a first-of- its-kind effort, is to advance the understanding of hypertrophic cardiomyopathy (HCM) and dilated cardiomyopathy (DCM), two types of heritable heart disease affecting nearly 2.4 million adults and children in the U.S. and Europe.

Cardiomyopathy Research Netherlands

Patients with cardiomyopathy and Researchers are working together to find a solution for the congenital and/or genetic heart (muscle) disease or cardiomyopathy. Together with worldwide Research Institutes, hospitals and other Patient Organizations, we want to represent the interests of all gene carriers and their families: by conducting scientific Research on inherited heart diseases, by tracing family members with predisposition at early stage and by striving for better treatment.

Cardiology Definitions

Cardiomyopathy represents a group of diseases of the heart, which involve the heart muscle itself resulting in contractile and relaxation dysfunction of both ventricles leading to progressive chamber dilatation and then hypocontractile walls.


Cardiomyopathy often goes undiagnosed,5 so the numbers can vary. As many as 1 of 500 adults may have this condition.6,7 Males and females of all ages and races can have cardiomyopathy. Dilated cardiomyopathy is more common in blacks than in whites and in males than in females.5 Hypertrophic cardiomyopathy is thought to be the most common inherited or genetic heart disease. While this type of cardiomyopathy occurs at many ages, in children and young adults with this condition there may be no symptoms, yet they are at high risk of sudden cardiac death.

Mayo Clinic

Cardiomyopathy is a disease of the heart muscle. The name comes from the roots "cardio" meaning heart, "myo" meaning muscle and "pathy" meaning disease. The known causes of cardiomyopathy are many, and include coronary artery disease and valvular heart disease.


Cardiomyopathy is a weakening of the heart muscle or a change in heart muscle structure. It is often associated with inadequate heart pumping or other heart function abnormalities.

National Heart Lung and Blood Institute

Cardiomyopathy refers to diseases of the heart muscle. These diseases have a variety of causes, symptoms, and treatments. In cardiomyopathy, the heart muscle becomes enlarged or abnormally thick or rigid. In rare cases, the muscle tissue in the heart is replaced with scar tissue.

Cardiomyopathies are diseases of the heart muscle. This group of pathological conditions includes dilated cardiomyopathy, hypertrophic cardiomyopathy, restrictive cardiomyopathy, arrhythmogenic right ventricular cardiomyopathy, and left ventricular noncompaction cardiomyopathy. They can be hereditary or acquired conditions.

Texas Heart Institute

About 500,000 Americans have cardiomyopathy, and many do not even know they have the condition. Cardiomyopathy is a leading cause of heart failure and the most common reason for needing a heart transplant.

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