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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 can better advance research to ultimately find effective treatments and potential cures for genetic cardiomyopathy.
The registry has been created with the intent to develop a large, global and long-term database and resource on genetic cardiomyopathy and invites eligible participants from around the world to contribute their information and help advance genetic cardiomyopathy research. De-identified data compiled in the registry aims to answer important questions, allow a better understanding of genetic cardiomyopathy, and potentially identify new research opportunities.
What is the Genetic Cardiomyopathy Registry?
The Genetic Cardiomyopathy Registry is an online registry for people with genetic cardiomyopathy, or with a gene mutation suspected to cause cardiomyopathy, or those who suspect genetic cardiomyopathy may run in their family (“eligible participants”). This registry includes a series of surveys, which ask questions about a person’s experience with cardiomyopathy over time. The registry is sponsored by The DCM Foundation in partnership with the Genetic Cardiomyopathy Awareness Consortium and hosted by the
National Organization for Rare Disorders (NORD®) on their IAMRARE® platform. This registry is only intended to collect information from eligible participants (or their authorized representatives).
What types of data will be collected in the Genetic Cardiomyopathy Registry?
The Genetic Cardiomyopathy Registry collects data on the following topics:
- Genetic cardiomyopathy information
- Medical history and diagnostics
- Socio-demographics
- Treatments and disease progression
Is the data secure?
The Genetic Cardiomyopathy Registry follows strict government guidelines to assure patient information is protected. The platform is served over HTTPS, which means that the data is encrypted when being sent from the user’s browser to the NORD servers. The data is also kept encrypted in the NORD database. Communications between the registry platform application server and the database are also encrypted. As with any information one provides electronically, there is a very rare chance that privacy could be compromised. However, the registry and the security measures minimize the chance of
this occurring.
Video links:
User Guide
NORD team will provide the following: https://eheregistry.iamrare.org/wp-
content/uploads/sites/23/2023/03/EHE-Registry-Participant-User-Guide.pdf
Frequently Asked Questions
Thank you for your interest in the Genetic Cardiomyopathy Registry. Below are some of the frequently asked questions to help you learn more about this registry. An expanded list of questions can be found here.
If you have additional questions, please contact us at info@geneticcardiomyopathy.org.
Who can join the Genetic Cardiomyopathy Registry?
This study is open to people with genetic cardiomyopathy, or with a gene mutation suspected to cause cardiomyopathy, or those who suspect genetic cardiomyopathy may run in their family (“eligible participants”) and meet the study inclusion criteria for participation.
What is a Patient Registry?
A patient registry is a collection of standardized information about a group of patients who share a condition. The information may be used for a variety of purposes such as conducting natural history studies and supporting disease-specific clinical trial recruitment.
What is the purpose of the Genetic Cardiomyopathy Registry?
The purpose of the Genetic Cardiomyopathy Registry is to bring the genetic
cardiomyopathy community together and collect data from patients to advance knowledge about genetic cardiomyopathy. The registry has been created with the intent to develop a large, global and long-term database and resource on genetic cardiomyopathy. The DCM Foundation and the Genetic Cardiomyopathy Awareness Consortium invite eligible participants from around the world to contribute their information and help advance genetic cardiomyopathy research. Data compiled in the registry might answer important questions, allow a better understanding of genetic cardiomyopathy, and potentially identify new research opportunities.
The primary goal of the Genetic Cardiomyopathy Registry (GCR) is to create the largest direct-to-patient registry for genetic cardiomyopathy.
Other registry goals include the following:
- Identify significant numbers of participants with genetic cardiomyopathy.
- Guide participants on where and how to obtain genetic testing.
- Notify participants of research studies and clinical trials.
- Make genetic testing, diagnosis and research of genetic cardiomyopathy
more patient-centric, while increasing health equity on a geographic,
socio-economic, and diversity basis through the broad reach of the DCM
Foundation and Genetic Cardiomyopathy Awareness Consortium.
What types of data will be collected in the Genetic Cardiomyopathy Registry?
The data collected includes but is not limited to:
- Genetic cardiomyopathy information
- Medical history and diagnostics
- Socio-demographics
- Treatment and disease progression
After consenting to join the registry, can a person choose to stop participating in the registry?
Participants are able to stop participating and withdraw from the registry at any time. However, researchers may still use the information that they have collected prior to the participant changing their mind. Information that has already been shared with researchers prior to withdrawal cannot be retrieved or removed.
The Informed Consent Form is available upon request for review. Please email
info@geneticcardiomyopathy.org to request the appropriate Consent form by telling us if you are an adult over the age of 18 consenting for yourself, a legally authorized representative consenting for a person under the age of 18 or an adult who cannot consent his/herself, or a designated representative of someone who is deceased.
Who is conducting this research?
The Genetic Cardiomyopathy Registry is being sponsored and managed by the DCM Foundation in partnership with the Genetic Cardiomyopathy Awareness Consortium. A research study sponsor is an individual, company, institution, or organization responsible for assigning appropriately trained and experienced researchers and staff to conduct a study. The sponsor is also responsible for the initiation and management of this registry, as well as any costs associated with the registry. As the sponsor, the DCM Foundation’s responsibility is to ensure that this registry is conducted in a reputable, ethical manner and upholds regulations as they apply to this research.
Contact Us
Sponsor
DCM Foundation
7826 Kate Brown Drive, Dublin, Ohio 43017
info@geneticcardiomyopathy.org
IRB
North Star Review Board
https://learningirb.org
info@northstarreviewboard.org
An Institutional Review Board, for the purpose of protecting Study Participant’s rights, has reviewed this registry. An Institutional Review Board is a group of people who are responsible for protecting the rights and welfare of people who participate in studies.
For questions about your rights as a Study Participant in this Registry or to discuss other study-related concerns or complaints with someone who is not part of the Genetic Cardiomyopathy Patient Registry team, you may contact North Star Review Board at 877-673-8439 (toll-free) or info@northstarreviewboard.org.
Social Media
Genetic Cardiomyopathy Awareness Consortium | Facebook
Genetic Cardiomyopathy Awareness Consortium | Instagram
Genetic Cardiomyopathy Awareness Consortium | LinkedIn
Visit the National Organization for Rare Disorders home page at rarediseases.org.
Researchers/Pharma
If you are interested in learning more about how the Genetic Cardiomyopathy Registry could help you recruit patients for your research project or clinical trials, email: info@geneticcardiomyopathy.org.