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.
Why should I join a Genetic Cardiomyopathy Registry?
By joining a registry, you contribute to valuable research that could lead to improved diagnosis, treatment, and prevention of genetic cardiomyopathy for yourself and future generations.
You may choose to opt in to be notified about new research studies and clinical trials.
What information is collected?
The registry collects a range of information, including your medical and family history, genetic test results, symptoms and disease progression, treatments and their effectiveness, lifestyle factors, and your overall quality of life.
Is my information safe?
Yes, your information is safe. The registry employs strict privacy measures to de-identify and protect your data. Researchers access the data in a way that safeguards your identity, and the registry adheres to all applicable privacy laws.
Will joining affect my care?
No, joining the registry will not affect your medical care in any way. Your participation is entirely voluntary and you have the freedom to withdraw from the registry at any time.
Who is eligible?
Individuals of any age with a confirmed diagnosis of genetic cardiomyopathy or those suspected of having the condition are eligible to join. Family members may also be eligible, even if they have not received a diagnosis themselves.
How do I join?
Joining is simple. You can visit the registry website and provide your informed consent to enroll online.
Are there any risks?
The risks associated with joining the registry are minimal. The primary concern is the potential for data breaches, although this is mitigated through the implementation of robust security measures.
Will I be paid?
Participation in the registry is voluntary and unpaid. However, your contribution is invaluable, as it helps advance crucial research in the field of genetic cardiomyopathy.
How long will my data be kept?
Your data will be kept in the registry indefinitely or until you choose to withdraw your consent and request the removal of your information.
Will I be updated on research findings?
Yes, you have the option to opt-in to receive updates on the latest research findings and be notified about relevant studies that you may be eligible to participate in.
Can my family members also join the registry?
Family members of individuals with genetic cardiomyopathy are encouraged to join the registry, even if they haven’t been diagnosed themselves. This can help researchers understand how genetic cardiomyopathy is passed down through families.
Will I receive communications from the registry?
You will have an opportunity to opt-in to various kinds of communications from the sponsors of the registry. You will also receive an email reminder to update your survey information on an annual basis.
Additional Considerations:
- It is important to carefully review the informed consent document before joining a registry to make sure you understand the purpose of the research, the type of information that will be collected, and how your information will be used and protected.
- Feel free to ask the registry staff any questions you may have before deciding to participate.
- Your participation in the Genetic Cardiomyopathy Registry can make a significant difference in improving the lives of individuals and families affected by this condition.
- For a comprehensive understanding of the registry and its processes, please consult the full registry documentation and do not hesitate to ask any questions you may have.