Pediatric Heart Network (PHN)

Major achievements and scientific findings from the PHN include:

• Teenagers born with a single working ventricle of the heart—a rare defect that cannot be completely corrected—showed a significant improvement in their ability to sustain moderate exercise after treatment with udenafil, a drug that helps improve blood flow
• In the Single Ventricle Reconstruction (SVR) Trial, the largest clinical trial to compare surgical treatments for congenital heart disease, researchers found that infants born with a severely underdeveloped heart who undergo a newer surgical procedure were more likely to survive their first year and not require a heart transplant than those who had a more traditional surgical procedure. But when children were evaluated after 12 months of age, no differences were found in transplant-free survival. This group of children is continuing to be studied a decade later to help researchers understand the long-term effects of the different surgical procedures.
• The PHN Nursing Research Program was developed to support studies led by nurse investigators. PHN nurse investigators ask questions that may not be the primary focus of their physician investigator colleagues, such as those related to quality of life, emotional adaptation of families, or feeding and growing difficulties in children with severe forms of congenital heart disease.

The NHLBI also helped support the development of the Children and Clinical Studies website. Children have often had to accept medicines and treatments based on what is known to work in adults. To improve clinical care of children, more studies are needed focusing on children's health, with the goal to develop treatments, drugs, and devices specific to children. This website answers questions and features parents, researchers, and children themselves sharing their thoughts and experiences about clinical research.

As a whole, the PHN provides researchers with a powerful platform for advancing the health of individuals affected by congenital or pediatric-acquired heart disease. Perhaps most importantly, it has brought together a group of people for sustained collaboration over a significant period of time. The PHN has become such an established enterprise that every year U.S. News and World Report uses participation in the PHN as one of the criteria when judging hospitals in its annual issue on the Best Children’s Hospitals.

Investigators are encouraged to use the PHN’s available data sets and resources in their research. The PHN is also focused on training the next generation of researchers and establishing productive collaborations with foundations and patient advocacy groups.