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)

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