Design and implementation of the North American Pediatric Cardiomyopathy Registry

Area of Science:

• Pediatric Cardiology
• Epidemiology
• Clinical Research

Background:

• Pediatric cardiomyopathy presents significant health challenges in individuals under 18.
• Limited data exists on the epidemiology and clinical course of pediatric cardiomyopathies.
• Developing targeted treatments requires a better understanding of disease etiology and natural history.

Purpose of the Study:

• To establish the Pediatric Cardiomyopathy Registry (PCMR) for children aged 18 years or younger.
• To describe the epidemiologic features and clinical course of pediatric cardiomyopathies.
• To facilitate the development of etiology-specific treatments for pediatric cardiomyopathy.

Main Methods:

• Recruited 61 private and institutional pediatric cardiomyopathy practices in the US and Canada.
• Established a prospective, population-based cohort and a retrospective cohort (diagnosed 1991-1996).
• Collected annual follow-up data on all participating patients.

Main Results:

• As of June 1999, the PCMR included 337 prospectively identified and 990 retrospectively identified patients.
• Demonstrated the feasibility of creating a large sociodemographic and clinical database for pediatric cardiomyopathy.
• The registry successfully aggregated data from multiple clinical sites.

Conclusions:

• The PCMR provides a robust platform for studying pediatric cardiomyopathy.
• The registry will yield precise incidence estimates and enhance understanding of the disease's natural history.
• This cooperative effort is crucial for advancing research and treatment of pediatric cardiomyopathy.