The Pediatric Cardiomyopathy Patient Registry is an international repository of patient and caregiver reported data that captures the lived experience of children diagnosed with cardiomyopathy.
The Patient Registry is a collaborative effort to collect natural history data on individuals diagnosed with cardiomyopathy as a child (under age 18). The Patient Registry is a collaborative effort to collect natural history data on individuals diagnosed with cardiomyopathy as a child (under age 18). The Patient Registry is sponsored by the Children's Cardiomyopathy Foundation and hosted on the secure and HIPAA-compliant IAMRARE® platform maintained by the National Organization for Rare Disorders (NORD®).
Empowering Families in Research
Families can directly contribute to research, helping researchers to identify trends and patterns. To join the Patient Registry, you can self-register online and start completing surveys covering topics such as heart health, genetics, treatment, and the psycho-social impact of the disease.
- Provide patient-centered information that allows healthcare teams to understand how to improve care
- Direct research efforts to areas of greatest interest to affected families in order to identify the best treatment
To view frequently asked questions, click here.
Accelerating Research & Treatment
Pediatric cardiomyopathy is not a well understood disease, and further investigation is needed to determine what causes variations in its progression and outcomes. Sharing your child's health information and your experience of being a caregiver can help answer questions such as:
- Why is the disease more severe in some children?
- How do different genetic mutations affect outcomes?
- Which children are at greater risk for heart failure or cardiac arrest?
- Which treatments are most effective in children?
- How does the disease impact family well-being?
As more long-term data is collected, researchers can collaborate on new studies to improve care and outcomes.
Learn about Research Studies & Clinical Trials
By joining the Patient Registry, you will become part of a global research community and will be notified of relevant research studies and clinical trials. You may also have an opportunity provide input on how clinical trials are designed and whether therapies in development reflect real patient needs.
If you have questions or need assistance with registering, please contact us at patientregistry@childrenscardiomyopathy.org.