About the Pediatric Heart Network

The Pediatric Heart Network (PHN) is a group of hospitals across the United States, Canada and other countries that conduct research in children with congenital heart disease (CHD) or pediatric acquired heart disease and adults with congenital heart disease (ACHD).

Our History

The PHN was created and funded in 2001 by the National Heart, Lung and Blood Institute (NHLBI) to improve outcomes and quality of life in children with heart disease. More recently the mission has expanded to include research in adults with congenital heart disease. The PHN supports doctors and nurses to design and carry out clinical research so that these populations can receive high-quality, evidence-based care.

The PHN is made up of clinical research hospitals, a Data Coordinating Center, and NHLBI/NIH. Participating hospitals with experienced research teams that specialize in the care of patients with heart disease were chosen to become part of the PHN. Auxiliary sites are brought on for specific studies, depending on enrollment and expertise needed.

Since 2001, the PHN has conducted 29 studies, including 12 clinical trials, with sample sizes ranging from 20-1250 participants

Our Mission

To improve health outcomes

in individuals of all ages with congenital heart disease or pediatric acquired heart disease.

To disseminate collaborative findings

as the basis for improved evidence-based treatment options and standards of care.

To train and to educate

new investigators.

To provide support and advocacy for families

during the conduct of excellent, ethical clinical research.

Our Research

PHN research teams specialize in the care of patients with heart disease.

All PHN research centers do the same studies. This helps to increase the total number of patients available for each study. When studies need more patients, other skilled centers, called auxiliary sites, may be trained in one or more studies.

All of the centers carefully follow a study protocol and treat patients in similar ways so that the study results are accurate. Careful attention is given to How Studies are Created and Monitored when a study is being planned and done.

PHN nurses and doctors are skilled in the care of patients 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 PHN studies and are sensitive to families with sick children. They can be a good resource for you as you decide whether to enroll yourself or your child in a research study.

Since 2001, the PHN has conducted multiple studies.

We currently have active studies in CHD, ACHD and dyslipidemia of obesity with participants ranging from birth to young adults. PHN conducts Phase I, II and III clinical trials, observational studies, quality improvement studies, nursing research and houses a health services research core.

Leadership

Data Coordinating Center (DCC)
Julie Miller, MPH, PMP
Felicia Trachtenberg, PhD
Allison Crosby-Thompson, MSc
Melissa Joyce, CCRP
Lauren DiStefano, MBA
NHLBI
Gail Pearson, MD, ScD
Kristin Burns, MD
Bryanna Schwartz, MD, MPH
Vicki Pemberton, RNC, MS, CCRC
D'Andrea Egerson, RN
Lanre Ojese, MPH
Core Site Principal Investigator
Boston Children’s Hospital Sarah Di Ferranti, MD, MPH
Children’s Hospital of Atlanta/Emory University William Mahle, MD
Cincinnati Children’s Joint Heart Program Consortium (Cincinnati and U Kentucky) James Cnota, MD
The GATHER Consortium (Colorado and Wash U) Andrew Glatz, MD, MSCE
Medical University of South Carolina Andrew Atz, MD
New York Consortium (Columbia and Mount Sinai) Marc Richmond, MD, MS
University of Michigan Caren Goldberg, MD
University of Pittsburgh Bryan Goldstein, MD
University of Utah Richard Williams, MD