Pediatric Cardiomyopathy Registry

The North America Pediatric Cardiomyopathy Registry (PCMR) is a patient database established in 1994 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 from 100 medical centers across the United States, Canada and Puerto Rico is included in the registry. The PCMR study team has published numerous articles on their study findings, and the article The Pediatric Cardiomyopathy Registry and Heart Failure: Key Results from the First 15 years provides an overview of key findings.

CCF and PCMR Partnership

The Children’s Cardiomyopathy Foundation (CCF) partnership with the PCMR is a unique collaboration involving a patient advocacy group, federal agency and multiple medical centers. CCF funds PCMR studies to understand regional, ethnic, gender and age differences in cardiomyopathy and identify clinical factors that can predict mortality, congestive heart failure and the likelihood for heart transplantation.

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

Patient Enrollment

Patient enrollment for PCMR studies is only through participating study centers. The following centers are currently enrolling cardiomyopathy patients.

  • University of Miami/Jackson Memorial
  • Children's Hospital of Philadelphia
  • Montefiore
  • Columbia Presbyterian
  • Washington University
  • University of Alberta
  • Primary Children's
  • Vanderbilt University
  • Lurie Children's Hospital
  • Boston Children's Hospital
  • Cincinnati Children's Hospital Medical Center

Research Resource

The PMCR data is a public research resource. Researchers interested in utilizing PCMR data should contact Jay Wilkinson, M.D., M.P.H., Director of the PCMR Administrative Coordinating Center.

Scientific Meetings

 

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The Children's Cardiomyopathy Foundation is a 501 (c)(3) non-profit recognized by the U.S. Internal Revenue Service.
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