The Children’s Hospital of Philadelphia is the only institution studying the neurodevelopmental and other long-term outcomes of patients with diagnoses that cause pulmonary hypoplasia. Following children from birth throughout childhood ensures optimal outcomes and helps us to gain a better understanding of how this condition affects children over the long term.
The Pulmonary Hypoplasia Program (PHP) is designed to both utilize clinical data for research and to quickly and seamlessly integrate the expanded knowledge resulting from that research into improved care for children.
The PHP maintains a database of over 430 patients who have received or are currently receiving follow-up care. We have established a baseline for how these children do following treatment, and the program has already begun to yield insights that improve understanding of pulmonary hypoplasia and overall care. Our research has enabled the creation of clinical standards for treating pulmonary hypoplasia, better serving families.
The PHP study aims first to identify trends of outcomes for children with the various diagnoses leading to pulmonary hypoplasia. That information enables more extensive and useful counseling for parents who have just received a diagnosis for their child, and helps the team to identify topics for future research in areas that outcomes are less than optimal.
Studies of the neurodevelopmental outcomes for children with pulmonary hypoplasia is one example of the work being done to better understand what to expect for children with these diagnoses. Research published by CHOP's Pulmonary Hypoplasia Program in 2010 and 2011 shows neurodevelopmental outcomes are normal – the conditions and their repair do not appear to affect children’s neurocognitive development.
The team is currently engaged in numerous research projects to better understand long-term outcomes for patients with pulmonary hypoplasia and related conditions. Studies include:
Total patients enrolled in PHP Research Study as of Sept. 30, 2013: 432
As of 9/30/2013
*11 patients have two diagnoses and are counted in more than one category.
The following publications will help you in your search for more information about conditions that are commonly accompanied by pulmonary hypoplasia. Most are written by members of the PHP team at The Children's Hospital of Philadelphia.
Visit the Center for Fetal Diagnosis and Treatment's publication pages for additional publications related to the conditions treated by the PHP.