Children's Cardiomyopathy Foundation



The Pediatric Cardiomyopathy Repository was established in April 2006 by the Children's Cardiomyopathy Foundation with initial funding from the Andor Capital Management Foundation and additional support from the National Heart Lung and Blood Institute. Working in cooperation with the North American Pediatric Cardiomyopathy Registry, DNA and tissue samples from diagnosed cardiomyopathy patients under the age of 18 years are being obtained from a select group of transplant centers across the United States. All participating centers have been approved by their Institutional Review Board and patient privacy and confidentiality are protected.

The Repository is housed at the Baylor College of Medicine in Houston, Texas, managed by the New England Research Institute and overseen by a Repository Steering Committee comprised of clinical physicians, research scientists, lay representatives, bio-ethicists and bio-statisticians. The repository was developed as a research resource to serve the needs of the international scientific community. The intent is to remove some of the obstacles related to studying the disease by providing well-characterized and categorized specimens with corresponding clinical data to qualified investigator.

The establishment of this repository along with the patient registry is a significant milestone for the pediatric cardiomyopathy community. Currently, causes are determined in less than one-third of diagnosed cases. With appropriate DNA and tissue specimens, future genetic and viral genome screening will be possible, increasing the chances that a genetic or acquired cause of cardiomyopathy will be identified. Also, the correlation of screening results with the Pediatric Cardiomyopathy Registry's rich clinical data is expected to improve the ability to describe the course, outcomes, and predictive factors in pediatric cardiomyopathy patients, thereby helping to develop better therapies and improve outcomes for patients with this disease. As more blood and tissue samples are collected, CCF hopes that more investigators will be attracted to studying pediatric cardiomyopathy, thereby accelerating the search for a cure.

To Submit Blood or Tissue Samples

Affected individuals interested in donating blood or cardiac tissue samples (through heart transplant, heart surgery, biopsy or autopsy) can do so at participating repository clinical sites. For a list of these centers or information on the procedures, please contact the Foundation.

To Request Biological Samples for Research

Researchers with an interest in either donating or exchanging cardiomyopathy cell lines or in applying to use materials from the repository should contact the Foundation for more information.