PEDIATRIC CARDIOMYOPATHY REGISTRY

The Children’s Cardiomyopathy Foundation (CCF)’s maintains a strong partnership with the North American Pediatric Cardiomyopathy Registry (PCMR), which is a patient database supported by the National Heart, Lung, and Blood Institute to describe the epidemiologic features and clinical course of cardiomyopathies in children aged 18 years or younger. Data from more than 3,500 children with cardiomyopathy has been collected from 100 medical centers across the United States, Canada, and Puerto Rico.

With funding support from CCF, the PCMR study team has published numerous articles on their multi-center study findings. The article, The Pediatric Cardiomyopathy Registry and Heart Failure: Key Results from the First 15 Years, published in Heart Failure Clinics, provides an overview.

Research Initiatives

CCF funds multiple PCMR studies to understand regional, ethnic, gender, and age differences in cardiomyopathy and to identify clinical factors that can predict mortality, congestive heart failure, and the likelihood for heart transplantation. More recently, the PCMR and CCF are focused on studying the relationship between genetic abnormalities (genotype) and clinical signs (phenotype) and determining which risk factors can predict disease severity in a child with cardiomyopathy. The Foundation works closely with the PCMR in several research areas.

  • Sponsoring think tank sessions and working groups
  • Supporting data analysis
  • Funding manuscript development, medical editing, and journal submissions
  • Covering patient recruitment costs
  • Supporting research personnel
  • Disseminating publication results

PCMR Centers

Medical centers participating in PCMR research studies handle patient enrollment directly through their center.

  • Arkansas Children's Hospital
  • Boston Children's Hospital
  • Children's Hospital Los Angeles
  • Children's Hospital of Philadelphia
  • Children's Hospital of Pittsburgh
  • Children's Medical Center Dallas
  • Children's National Medical Center
  • Children's Omaha
  • Cincinnati Children's Hospital Medical Center
  • Columbia University
  • Emory University
  • John R. Oishei Children’s Hospital 
  • Johns Hopkins University
  • Le Bonheur Children's Hospital
  • Lucile Packard Children's Hospital
  • Lurie Children's Hospital of Chicago
  • Montefiore Medical Center
  • Riley Hospital
  • Seattle Children's Hospital
  • Stollery Children's Hospital
  • UCLA Mattel Children's Hospital
  • University of Alabama
  • University of Colorado Denver
  • University of Michigan
  • University of Utah
  • Vanderbilt University Medical Center
  • Washington University
  • Wayne State University

Research Resource

The PMCR is a public research resource. Researchers interested in utilizing data from the PCMR should contact CCF or Steven E. Lipshultz, MD, Director of the PCMR Administrative Coordinating Center.