What is the Pediatric Cardiac Genomics Consortium (PCGC)?
The Pediatric Cardiac Genomics Consortium (PCGC) is a group of hospitals in the United States and England that conducts research studies in children with congenital or acquired heart disease. Congenital heart defects occur in approximately 40,000 infants in the US each year and are a major cause of infant death. Acquired heart disease can cause death and long-term disability.
The PCGC was started in 2009 by the National Heart, Lung, and Blood Institute to learn more about why children are born with heart disease. All of the centers carefully follow a study protocol. The PCGC centers use similar brochures and consent forms to share with families who may want to enter a study. Patient safety is a high priority when a study is being planned and done. (See “Ensuring Safety in PCGC Studies.”)
PCGC nurses and doctors are skilled in the care of children with heart disease and in the conduct of clinical studies. They have had special training in doing research in ways that help to protect patients in a study. They also have training in how to conduct the specific PCGC studies and are sensitive to families with sick children. They can be a good resource for you as you decide whether to allow your child to enter a PCGC study.