PHN is comprised of participating hospitals who collaborate with experienced research teams that specialize in the care of pediatrics patients with heart disease.
The major barriers to clinical studies in pediatric heart disease include few patients with a particular congenital heart defect at any one center, differences in treatment approaches and lack of resources to provide national coordination of collaborative research. Additional barriers relate to parents being unaware of studies, living a distance from a research site or lacking familiarity with what happens during a study.
The network approach attempts to address these barriers by offering an effective, flexible way to study adequate numbers of patients with uncommon diseases through a common infrastructure for recruiting, monitoring, and following patients whose conditions will be characterized in a standard fashion.
All of the centers that are part of the PHN carefully follow a study protocol, collect identical data and treat patients in similar ways. The PHN centers use similar brochures and consent forms. Research teams have been trained in Human Subjects Research as required by the National Institutes of Health (NIH) as well as trained in study conduct for each protocol in the PHN.
If you are interested in developing a clinical research career in pediatric cardiology, we recommend reading this PHN publication [PDF].