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GCR Terms & Definitions

Informed Consent Form (ICF)An ICF is a document that provides potential participants with key information about the registry. This document helps potential participants to make an informed decision whether to join or not. Information will include topics such as: the risks and benefits of the research project, use of data, and participant privacy. If they choose to join the study, participants are required to electronically sign the ICF. This indicates that they agree to the terms as described before entering data into the registry or responding to surveys.  Institutional Review Board (IRB)An IRB is a board formally designated by an…

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Genetic Cardiomyopathy Registry (GCR) FAQs

1. What is the Genetic Cardiomyopathy Registry? The Genetic Cardiomyopathy Registry (GCR) is a secure online research database that collects information from individuals with or suspected of having genetic cardiomyopathy. This valuable data helps researchers better understand these conditions, leading to improved diagnosis, treatment, and prevention methods. The GCR is an online platform collecting data from individuals with genetic cardiomyopathies to advance research and improve patient care. 2 . What is the purpose of the Genetic Cardiomyopathy Registry? The purpose of the Genetic Cardiomyopathy Registry is to bring the Cardiomyopathy community together and collect data. Some of the goals of…

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Gene-Specific Cardiomyopathy Facebook Groups

Please click the link below to view and join a group: BAG3 Cardiomyopathy Support DSP Cardiomyopathy Support Danon Disease (LAMP2) Support FLNC Cardiomyopathy Support LMNA Cardiomyopathy Support MYBPC3 Cardiomyopathy Support MYH7 Cardiomyopathy Support PKP2 Cardiomyopathy Support PLN Cardiomyopathy Support RBM20 Cardiomyopathy Support TITIN Cardiomyopathy Support TNNT2 Cardiomyopathy TPM1 Cardiomyopathy Support *This list is being expanded. If you do not see your gene listed and would like to start a group, please email: info@geneticcardiomyopathy.org Dilated Cardiomyopathy Facebook Groups Dilated Cardiomyopathy – private group Dilated Cardiomyopathy – public group

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Finding Expert Care

It is critical to get the right care. Many cardiologists may not be heart failure specialists or equipped to treat genetic cardiomyopathy. At the present time, there is no definitive way to find the “right doctor.” However, if you want to locate a heart failure or cardiomyopathy specialist, our partners at the DCM Foundation have created some resources to help you with this search.  Learn More

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Genetic Cardiomyopathy Registry

Help Advance Research Join Our Genetic Cardiomyopathy Registry Sign Up for the Registry Already Registered?Login HERE If you have NOT been genetically tested, click HERE to sign up for genetic testing. Patients Powering Research for Genetic Cardiomyopathy Genetic Cardiomyopathy Registry The Genetic Cardiomyopathy Registry empowers eligible people to participate in a registry so that we can better advance research to ultimately find effective treatments and potential cures for genetic cardiomyopathy. Welcome to the Genetic Cardiomyopathy Patient Registry! Welcome, and thank you for supporting this important global patient-powered research initiative. Together, we will learn more about genetic cardiomyopathy so that we…

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Genetic Cardiomyopathy Registry (GCR) FAQs ORIGINAL

1. What is the purpose of the Genetic Cardiomyopathy Registry? The purpose of the Genetic Cardiomyopathy Registry is to bring the Cardiomyopathy community together and collect data. Some of the goals of the Genetic Cardiomyopathy Registry are: To describe the people who have Cardiomyopathy and to better understand the stages of the disease and the different ways the disease affects people. To do this, we will ask about diagnosis, treatment, medical history, social and economic environment, and treatment outcomes.  To identify significant numbers of participants with genetic subtypes of cardiomyopathies.  To guide participants on where and how to obtain genetic…

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