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TL;DR
No completed results are reported; the paper outlines the planned minimum dataset, harmonisation with ANZNN, and the potential to inform a future clinical quality registry.
International Journal of Population Data Science · 8 authors, 5 centres
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No completed results are reported; the paper outlines the planned minimum dataset, harmonisation with ANZNN, and the potential to inform a future clinical quality registry.
This paper presents a study protocol for a proof-of-concept registry of babies admitted to special care nurseries, nested within the Generation Victoria (GenV) whole-of-Victoria cohort. The protocol targets all babies born in Victoria from Oct-2021 to Oct-2023, with infants admitted to SCN eligible. The planned minimum dataset will be harmonised with the Australian and New Zealand Neonatal Network (ANZNN) and will extend to SCN-only items covering maternal, antenatal, newborn, respiratory, cardiac, infection, nutrition, feeding, cerebral and other domains. The registry aims to address the absence of a dataset comparable to ANZNN for SCN care. Integration with the GenV longitudinal cohort and linked datasets is intended to support long-term research. The authors state the registry may lay the groundwork for a stand-alone ongoing clinical quality registry after GenV.