Collaborating to Improve Outcomes in Congenital Heart Disease: The Pediatric Heart Network Experience

In the 1990s, there were few multicenter research collaborations and pediatric cardiovascular clinical trials. The National Heart, Lung, and Blood Institute at the National Institutes of Health established the Pediatric Heart Network (PHN) in 2001 to stimulate multi-center collaboration and clinical studies in children and adults with congenital heart disease (CHD) and pediatric acquired heart disease.

The PHN developed a flexible infrastructure for multi-center collaborative clinical research in children and adults with CHD and pediatric acquired heart disease. The objectives of the PHN are to improve health outcomes in individuals of all ages with CHD and pediatric acquired heart disease, to disseminate findings to improve treatment options and standards of care, to train and educate new investigators, and to support families during the conduct of clinical research.

To date, the PHN has conducted 30 studies, including 13 clinical trials, across over 60 sites and has enrolled over 10,000 participants. PHN studies have impacted clinical practice and guidelines in CHD and have supported the career development of young investigators, research nurses, and study coordinators. None of this would have been possible without the many partnerships with patient advocacy organizations, the U.S. Food and Drug Administration, a variety of industry collaborators and clinical registries. PHN studies have leveraged registry data to improve efficiency, minimize burden and reduce errors in data collection.

The PHN's success is due to fostering collaboration across pediatric cardiology centers, creating a clinical research infrastructure that can adapt to different types of studies, and emphasizing career development of young investigators and research coordinators. This paper will summarize the PHN's history, partnerships, use of clinical registries, future directions, and ways to get involved.