IJPDS International Journal of Population Data Science

Globally, around 10% of newborns arrive either early (before 37 weeks gestation), or sick. This drives lifelong legacies of disability and developmental delay. Our ability to prevent this from happening and to provide better care are vital.

In a new study called ‘Generation Victoria (GenV) special care nursery registry’ published in the International Journal of Population Data Science (IJPDS), researchers from the Murdoch Children’s Research Institute address an important gap: the lack of clinical quality registries for most of these babies. Almost all preterm or sick babies enter special care nurseries, and some enter neonatal intensive care units. Yet, while the latter babies benefit from decades of systematic research, this is less available for those in special care nurseries.

The importance of gathering data on preterm and sick babies for research cannot be overemphasised, and there is no doubt that clinical quality registries can help drive better care and outcomes. They can be used to gather data, monitor outcomes, compare practices, and conduct trials. However, only one such registry exists in the world that focuses on special care nursery babies, and none in Australia.

Dr Jing Wang commented that “This is a unique opportunity to establish an interim special care nursery registry with the new Generation Victoria (GenV) initiative.”

GenV is the only very large birth cohort being launched internationally. It is targeting all 150,000 babies born over 2 years in the state of Victoria, Australia. Based in all 58 birthing hospitals, GenV can collect a wealth of consented clinical data from all 40 special care nurseries in Victoria – public and private, urban and rural. In their latest study, the researchers outline their protocol, focusing on value of GenV both locally (to services) and internationally (to all researchers). They also hope it will pave the way for a stand-alone registry that continues after the GenV window.

The aim of this collaboration is to improve care, outcomes, and discovery. The resource’s value will grow over time with GenV’s biosamples, outcomes, and linked administrative data. These comprehensive data will complement existing data for neonatal intensive care unit babies and build an evidence base for better physical, mental and developmental outcomes for vulnerable babies.

 

Click here to read the full open access article

Dr Jing Wang and Professor Melissa Wake, The Centre for Community Child Health, Murdoch Children’s Research Institute, Australia

Wang, J., Hu, Y., Collins, L., Fedyukova, A., Aggarwal, V., Mensah, F., Cheong, J. and Wake, M. (2023) “Study protocol: Generation Victoria (GenV) special care nursery registry”, International Journal of Population Data Science, 8(1). doi: 10.23889/ijpds.v8i1.2139.