Study protocol: Generation Victoria (GenV) special care nursery registry

Area of Science:

• Neonatal care
• Clinical quality registries
• Longitudinal cohort studies

Background:

• Newborn babies admitted to special care nurseries (SCN) face immediate and long-term health challenges.
• Existing data collection for SCN lacks a comprehensive network comparable to the Australian and New Zealand Neonatal Network (ANZNN).

Purpose of the Study:

• To establish a proof-of-concept, Victoria-wide registry for infants admitted to SCN.
• To embed this registry within the Generation Victoria (GenV) cohort for enhanced data linkage and research potential.

Main Methods:

• The registry will function as a sub-cohort of GenV, enrolling babies born in Victoria between October 2021 and October 2023 who are admitted to SCN.
• A minimum dataset will be harmonized with ANZNN standards, incorporating SCN-specific data on maternal, antenatal, newborn, respiratory, cardiac, infection, nutrition, feeding, and neurological factors.
• The protocol details the cohort, timeline, and integration strategy with the GenV longitudinal cohort and linked datasets.

Main Results:

• The registry aims to collect comprehensive data on a significant cohort of infants requiring specialist neonatal care.
• The data collected will be harmonized with existing standards (ANZNN) while including unique SCN-focused variables.

Conclusions:

• This registry will enhance understanding of the health and developmental trajectories of infants in SCN.
• The project lays the foundation for a potential stand-alone clinical quality registry to improve neonatal care and outcomes.
• The integrated data will serve as a valuable resource for future longitudinal research on infant health.