MULTICENTER STUDIES
The Children’s Cardiomyopathy Foundation (CCF) plays a critical role in advancing research on childhood cardiomyopathies by supporting multicenter studies utilizing data from the North American Pediatric Cardiomyopathy Registry (PCMR).
Investigators at the 2025 North American Pediatric Cardiomyopathy Registry (PCMR) retreat in Buffalo, NY
About the PCMR
Established in 1995, the PCMR is one of the largest and most comprehensive registries dedicated to pediatric cardiomyopathy. The registry includes clinical data collected by pediatric cardiologists at 98 centers across North America, beginning in 1995. Children from birth through age 18 are eligible for inclusion if they meet specific diagnostic criteria, determined by:
- Echocardiographic measurements
- Defined cardiomyopathy patterns
- Tissue-confirmed diagnosis
The registry includes children diagnosed with dilated, hypertrophic, restrictive, mixed, or other forms of cardiomyopathy. Children with secondary causes of heart muscle abnormalities, such as congenital heart disease or drug-induced cardiac hypertrophy, are excluded to ensure accurate, disease-specific data.
Research Initiatives
The PCMR study team, comprised of leading pediatric cardiologists and geneticists from 28 active sites, studies which clinical factors may help predict outcomes such as heart failure, the need for a heart transplant, or survival. More recently, CCF and the PCMR have focused on understanding how genetic differences correlate to a child’s symptoms and disease severity.
Over the years, CCF has supported the PCMR’s multicenter studies by funding working group retreats, statistical analyses, medical editing, abstract and manuscript submissions, and research coordinators. This has led to the publication of over 47 influential research articles.
By supporting the PCMR, CCF helps drive critical discoveries that improve diagnosis, treatment, care, and outcomes for children with cardiomyopathy and heart failure.
PCMR Study 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
- UPMC Children's Hospital of Pittsburgh
- Children's Dallas Medical Center
- Children's National Hospital
- Children's Nebraska
- Cincinnati Children's Hospital Medical Center
- Columbia University Medical Center
- Emory University
- Golisano Children’s Hospital of Buffalo
- Johns Hopkins University
- Le Bonheur Children's Hospital
- Stanford Children’s Health at Lucile Packard Children's Hospital
- Ann & Robert H. Lurie Children's Hospital
- Children’s Hospital at Montefiore
- Riley Hospital for Children at Indiana University Health
- Seattle Children's
- 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 PCMR is a public research resource. Researchers interested in utilizing data from the PCMR should contact Steven E. Lipshultz, MD, Director of the PCMR Administrative Coordinating Center.