Design and implementation of the North American Pediatric Cardiomyopathy Registry

The Pediatric Cardiomyopathy Registry (PCMR) was established to describe th e epidemiologic features and clinical course of selected cardiomyopathies i n patients aged 18 years or younger and to promote the development of etiol ogy-specific treatments. Sixty-one private and institutional pediatric card iomyopathy practices in the United States and Canada were recruited to part icipate in the PCMR. The registry consists of a prospective, population-bas ed cohort of patients in 2 regions (New England and the Central Southwester n United States) and a retrospective cohort of patients diagnosed between 1 991 and 1996. Annual follow-up data are collected on all patients. As of Ju ne 1999, the PCMR consisted of 337 prospectively identified and 990 retrosp ectively identified patients. The PCMR has demonstrated the feasibility of establishing a large database of sociodemographic and clinical information on children with pediatric cardiomyopathy. Through this cooperative effort, the PCMR will obtain precise estimates of the incidence of pediatric cardi omyopathy and a better understanding of the natural history of this disease .