The National Perinatal Epidemiology & Statistics Unit (NPESU) is a joint unit of the Centre for Big Data Research in Health (CBDRH) and the UNSW School of Clinical Medicine.
The NPESU manages and is Data Custodian of two regional clinical quality registries: the Australian and New Zealand Assisted Reproduction Database (ANZARD) and the Australian and New Zealand Neonatal Network (ANZNN).
ANZARD collects treatment and outcome data on all assisted reproductive technology (ART) cycles performed in Australian and New Zealand fertility clinics.
The ANZNN collects data on high-risk infants admitted to Category III and II neonatal intensive care units (NICUs).
The NPESU is also the Data Custodian of the World Assisted Reproductive Technology (ART) Registry on behalf of the International Committee on Monitoring Assisted Reproductive Technologies (ICMART). ICMART is a non-state actor in official relations with the World Health Organization (WHO).
Each registry plays a critical role in monitoring clinical care and outcomes, informing clinical practice and policy, providing evidence-based research and publishing annual surveillance reports.
We're creating and deploying a software framework (NextCR, comprising software code, documentation, training materials) that organisations can use to establish and operate highly secure, cloud-based next-generation clinical registries. It will address new national requirements for clinical quality registries in domains including orthopaedics, cardiovascular disease and cancer. It will use advanced software engineering and AI methods to transform near real-time data drawn directly from electronic medical records (EMRs) and other electronic data, including imaging. NextCR registries will provide highly-detailed, research-ready clinical data, leveraging international Common Data Models and terminologies to maximise data interoperability.