The Neonatal Intensive and Special Care Units' Data Registry (NICUS) was established more than 30 years ago to collect clinical data about preterm and sick babies requiring intensive care in NSW and the ACT.
NICUS also collects follow-up data on a subset of surviving children up to school age.
To date, NICUS has collected data on over 75,000 preterm and sick babies who required specialist intensive and/or special care after birth. The quality and safety improvement data collected by NICUS are used to inform policy and evidence-based clinical care of premature and sick babies and for research. These all aim to improve short and long-term outcomes of babies born in NSW and the ACT.
ACI’s NICUS team supports the collaboration between clinical groups, national bodies and the NSW Ministry of Health and other statewide pillars.
NICUS is one of several clinical registries managed by the ACI.
Governance
NICUS complies with NSW Health data governance requirements.
- Consent for inclusion in NICUS
- Privacy - Data are protected to ensure privacy of:
- individual babies and their parents
- participating neonatal services (NICUs and special care nurseries) caring for babies
- follow-up clinics assessing surviving children enrolled in NICUS.
NICUS data used for research projects undergo a rigorous approval process from a Human Research and Ethics Committee (HREC) before release. All data are de-identified to protect the privacy of babies, parents, and individual neonatal services.
NICUS in practice
NICUS data are collected prospectively by staff at each neonatal service. Data are sourced electronically from eMaternity records, clinical records, and pathology services. Data are entered into the NICUS database at each participating neonatal intensive care unit (NICU) or special care nursery (SCN) during the baby’s first admission after birth. Data are cleaned and audited by trained audit staff at each participating NICU and SCN. The NICUS coordinators at the ACI review all data for completeness and quality control.
Quality improvement projects and groups
NICUS data are used for quality improvement projects in neonatal services.
Research
NICUS supports research to improve clinical care and outcomes of babies born preterm and/or sick at birth.
Hospital analysis and reporting
Participating neonatal intensive and special care nurseries receive annual benchmarking reports and can access data reports from their neonatal intensive care unit or special care nursery
Clinical management
The NICUS database provides clinicians with a suite of clinical management tools including assisting with handover, discharge and prioritisation of infant care tasks.
Developmental follow up
NICUS supports developmental follow up of children born preterm and collects data and reports outcomes to school age.
Service planning
NICUS provides data to inform service planning, review and implementation at state and site level.
How to work with NICUS
- Join the Maternity and Neonatal Network
- Participate in quality improvement groups
- Engage with the database for clinical management
- Be a champion for data accuracy in your neonatal service
- Request service management data.
Please email aci-nicusregistry@health.nsw.gov.au for further information.