INCLUDE Grants

Data Fusion: A Sustainable, Scalable, Open Source Registry Advancing PVD Research

Abman, Steven HerbertMandl, Kenneth D

Pediatric pulmonary vascular disease (PVD), including pediatric pulmonary hypertension, although relatively rare in childhood, exacts a disproportionately high social and economic burden on the children and their families faced with this illness, as well as society as a whole. Yet, treatment options are limited and despite new drug therapies, survival of patients with severe PVD remains poor. We therefore establish a Bioinformatics Clinical Coordinating Center, comprised of experts and centers in pulmonology, cardiology, and bioinformatics, which will collect data on the largest research population of children with this disease to-date, and analyze both registry and electronic health record data in novel ways so that we may better address the many unanswered questions of PVD in children. (End of Abstract)

Down Syndrome Publications