Data Infrastructure

AN AUDACIOUS IDEA TO CREATE THE NATIONAL VIRTUAL CHILDHOOD CANCER REGISTRY (NVCCR)

An overarching theme of the CCDI Symposium was the "need for an infrastructure to enable federation among disparate pediatric data repositories" and "thinking big". Our big idea is to create a National Virtual Childhood Cancer Registry which includes every childhood cancer patient in the nation. This can be created now, employing emerging demonstratively successful technologies to connect existing and populated national databases such as the Virtual Pooled Registry – Cancer Linkage System with all state cancer registries in an automated and secure manners. Such infrastructure could be augmented with clinical, treatment and outcome data, through regular individual and secure linkages with national databases, producing an increasingly broadening comprehensive and population-based central data resource for childhood cancer research.

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Idea No. 984

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