2020-06 GenV Special Care Nursery Scoping Report Working Paper

Newborn babies who require specialist care account for substantial immediate and lasting burden of disease. The Australian and New Zealand Neonatal Network (ANZNN) has made major contributions towards improving the quality and consistency of neonatal intensive care data collection, but no comparable data set exists for the babies admitted to a special care nursery (SCN). Working with newborn experts across the state, this report aims to inform interim and final decisions as to whether to implement an ANZNN-harmonised extraction of data for all such babies born across Victoria, Australia, and entering GenV over two full years from mid-2021. This report considers requirements, likely data set, feasibility, stakeholder acceptability and consultation requirements, and funding and resourcing needs. We conclude that an SCN data extraction appears feasible, would generate translatable evidence, and could lay the groundwork for a stand-alone ongoing registry post-GenV.