Research

Pediatric Cardiomyopathy Registry Cohort Study

Protocol Description

The Pediatric Cardiomyopathy Registry (PCMR) is an ongoing research project to study the impact of cardiomyopathy on children and their families by gathering information on cardiomyopathy patients from hospitals and medical practices around the U.S. and Canada. The PCMR Cohort study, more specifically, will gather additional information about cardiomyopathy and its effects on day-to-day life, in hope of getting a better understanding of the causes of cardiomyopathy that will help doctors provide better treatments.

Eligibility Criteria

Boys and girls up to age 18, who have been diagnosed with cardiomyopathy, and their parents/guardians, are eligible to participate. Up to 400 children at 15 medical centers in the U.S. will be asked to participate.
Boys: Newborn - 18 years
Girls: Newborn - 18 years

Requirements
Parents/guardians are asked to complete questionnaires related to the child’s health and quality of life during the initial visit and once a year for the next 5. During the child’s regularly scheduled clinic visit, a blood sample will be taken in connection with routine testing.
Visits: 1 during a regularly scheduled clinic visit
Duration: Up to 5 years

Status: Enrolls Only from Current Patient Cases

Source of Support
National Heart, Lung and Blood Institute of the National Institutes of Health