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RP-A701

Build out custom top nav block Are you currently living with BAG3 Cardiomyopathy? If so, you may be interested in participating in the study of RP-A701, an investigational gene therapy being developed specifically for people with dilated cardiomyopathy caused by a BAG3 mutation. Start eligibility form What is the RP-A701 clinical trial? RP-A701 is an investigational gene therapy being developed specifically for people with DCM caused by a BAG3 mutation. The goal of this investigational therapy is to deliver a working copy of the BAG3 gene to heart muscle cells so they can produce the BAG3 protein at more typical…

Free Genetic Testing

Understanding Cardiomyopathy and Genetic Testing Cardiomyopathy is a serious heart problem and one of the main causes of heart failure and sudden heart-related death. Many people don’t know that up to half of all cases are genetic—meaning the condition can be passed down through families and affect several generations. Genetic testing can help find out what caused your cardiomyopathy, guide your doctor in choosing the right treatment, and give your family important information that could even save lives. Doctors and medical experts recommend by current medical guidelines: Genetic testing for people with non-ischemic cardiomyopathy    ➤ where it can help find the…

Genetic Re-testing

Below are 5 reasons why getting genetically re-tested might make sense for you. Reason 1: New Genes Included; Tests Keep Improving Genetic tests done years ago may have missed key genes, included ones no longer considered relevant, or failed to detect multiple variants that could now be identified. Re-testing can reveal updated, more complete results – including the possibility of having more than one variant that affects your heart. Click to see examples for Reason 1 Example 1:  DID YOU KNOW? Experts recently discovered that only 6 out of 26 genes previously linked to ARVC still have strong evidence. Many…

DCM-Specific Facebook Groups

These Facebook groups are for people with DCM and their loved ones. The groups offer support, information, and a place to connect with others who understand what you’re going through: “Dilated Cardiomyopathy” private group for DCM patients and family members “Dilated Cardiomyopathy” public group for DCM patients and family members

About Genetic Cardiomyopathy

Cardiomyopathy can have many different names and causes. At the Genetic CardioMYopathy Awareness Consortium, our focus is on cardiomyopathy that is inherited, or passed from one family member to the other. There are 55-75 genes that are known to cause genetic-based cardiomyopathy. Close to half of all cardiomyopathy cases have some type of genetic basis or are inherited but only a very small percentage of diagnosed cardiomyopathy patients are ever asked to get genetically tested by their cardiologists even though their governing organizations recommend genetic testing. If you are interested in exploring genetic testing go to Genetic Testing To learn…

Gene-Specific Facebook Groups

Living with cardiomyopathy can be difficult at times, but it’s important to know that you are not alone. If you or a loved one has been diagnosed with cardiomyopathy, it can be helpful to connect with others who are going through similar experiences. There are many online resources that can assist Genetic Cardiomyopathy patients and their family members to feel more hopeful and supported through this journey. Please explore the support resources below and click on the links provided to learn more about each resource. You can also donate directly to your gene specific group to help further the education…

Contact Us

InstagramThis field is for validation purposes and should be left unchanged.Name(Required) First Last Email(Required) Enter Email Confirm Email PhoneComments(Required)Please let us know what's on your mind. Have a question for us? Ask away. Please send me future updates from the Genetic Cardiomyopathy Awareness Consortium.

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…

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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