The Children's Cardiomyopathy Foundation works in partnership with the National Heart, Lung and Blood Institute funded North America Pediatric Cardiomyopathy Registry (PCMR). This patient registry was established to provide a population base to describe the epidemiologic features and clinical course of selected cardiomyopathies in patients aged 18 years or younger, and to promote the development of etiology specific treatments.
The PCMR, established in 1994, is a confidential database of children diagnosed withcardiomyopathy and is the only national registry of its type in North America. The database consists of 3,000 enrolled patients from 100 medical centers in the United States, Canada and Puerto Rico. The University of Miami is the PCMR administrative coordinating center and the New England Research Institute serves as the PCMR's data coordinating center.
CCF continues to collaborate with the PCMR in sponsoring think tank sessions and providing support for data analysis and publication of manuscripts. Findings from the PCMR will be important for understanding regional, ethnic, gender and age differences in cardiomyopathy. It will also help to determine whether certain baseline factors at diagnosis, or trends over time, can predict outcomes for mortality, late abnormalities of ventricular structure and function, congestive heart failure and listing for heart transplantation or receiving a heart transplantation.