Pediatric Cardiomyopathy Patient Registry

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 medical and quality of life data on individuals diagnosed with cardiomyopathy as a child (under age 18). To better understand how cardiomyopathy impacts children, information is collected through a secure online portal. A series of surveys asks questions about heart health, genetics, treatment, and the psycho-social impact of the disease.

The patient registry is designed as a long-term research study where participants can provide information about how their child’s health changes over time. 
Need for a Patient Registry

Cardiomyopathy in children is still not well understood and further investigation is needed to understand what causes variations in its progression and outcomes.

  • Why does the disease progress more severely in some children?
  • How do different genetic mutations affect outcomes in children?
  • Which children are more at risk for heart failure or cardiac arrest?
  • Which treatments are most effective in children?
  • How does the disease impact the well-being of the family?

As we collect more data about how the disease progresses in children, we can work with researchers to determine how to improve care and outcomes for children with this rare and chronic heart condition.

Become a Partner in Research

By contributing your child’s information and sharing your experience of caring for your child, you can help researchers better understand how cardiomyopathy affects children and determine the best way to manage their care. Your participation can make a difference in several areas.

  • Advance scientific knowledge
  • Improve long-term care strategies
  • Identify better diagnostic tools
  • Develop more targeted therapies
  • Build a global research network
  • Encourage research collaborations on data analysis and discovery
Learn about Research Studies & Clinical Trials

An additional benefit of joining the registry is that you will become part of a global research community, and we will notify you of any new relevant research studies and clinical trials. Your anonymous information also helps drug developers plan their trials and ensure equal access to trials and potential therapies.

If you have questions or need assistance with registering, please contact us at patientregistry@childrenscardiomyopathy.org.