About the Pediatric Heart Network

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.

Joining the Pediatric Heart Network

There are 3 ways that centers can participate in the PHN:

1. Become a member of the PHN by submitting an NIH application, undergoing a successful review and receiving an award. Every 5-7 years, the NHLBI issues a request for applications. We usually fund about 8 centers each cycle.
2. The PHN occasionally will add more centers in order to have adequate numbers of children for specific studies. For example, the Marfan study required adding 13 sites to the 8 PHN centers in order to recruit the 604 patients needed. Sites who have done other PHN studies, have expressed interest participating in a future study and those with particular expertise in the area being studied are considered.
3. Occasionally sites will become referral centers for some of our studies. This means that they refer patients to one of the PHN sites participating in a certain study and receive some form of compensation for doing so. This usually requires sites to be relatively close to one another geographically so that patients do not have to travel far distances to be involved in a study.