Murdoch Children's Research Institute, Royal Children's Hospital, Parkville, Victoria, Australia.
Department of Paediatrics, The University of Melbourne, Parkville, Victoria, Australia.
Int J Popul Data Sci. 2023 Jun 13;8(1):2139. doi: 10.23889/ijpds.v8i1.2139. eCollection 2023.
Newborn babies who require admission for specialist care can experience immediate and sometimes lasting impacts. For babies admitted to special care nurseries (SCN), there is no dataset comparable to that of the Australian and New Zealand Neonatal Network (ANZNN), which has helped improve the quality and consistency of neonatal intensive care through standardised data collection.
We aim to establish a proof-of-concept, Victoria-wide registry of babies admitted to SCN, embedded within the whole-of-Victoria Generation Victoria (GenV) cohort.
This prototype registry is a depth sub-cohort nested within GenV, targeting all babies born in Victoria from Oct-2021 to Oct-2023. Infants admitted to SCN are eligible. The minimum dataset will be harmonised with ANZNN for common constructs but also include SCN-only items, and will cover maternal, antenatal, newborn, respiratory/respiratory support, cardiac, infection, nutrition, feeding, cerebral and other items. As well as the dataset, this protocol outlines the anticipated cohort, timeline for this registry, and how this will serve as a resource for longitudinal research through its integration with the GenV longitudinal cohort and linked datasets.
The registry will provide the opportunity to better understand the health and future outcomes of the large and growing cohort of children that require specialist care after birth. The data would generate translatable evidence and could lay the groundwork for a stand-alone ongoing clinical quality registry post-GenV.
需要接受专科护理的新生儿可能会立即或长期受到影响。对于被送入特殊护理病房（SCN）的婴儿，目前还没有与澳大利亚和新西兰新生儿网络（ANZNN）相媲美的数据集，后者通过标准化数据收集，帮助提高了新生儿重症监护的质量和一致性。
我们旨在建立一个概念验证的维多利亚州范围内的 SCN 入院婴儿注册中心，该中心嵌入整个维多利亚州的 Generation Victoria（GenV）队列中。
该原型注册表是 GenV 内嵌套的深度子队列，目标是 2021 年 10 月至 2023 年 10 月期间在维多利亚州出生的所有婴儿。符合条件的是被送入 SCN 的婴儿。最小数据集将与 ANZNN 协调一致，以涵盖常见结构，但也将包括 SCN 专用项目，并将涵盖母婴、产前、新生儿、呼吸/呼吸支持、心脏、感染、营养、喂养、大脑和其他项目。本方案除了数据集之外，还概述了预期队列、该注册表的时间线，以及如何通过与 GenV 纵向队列和链接数据集的整合，将其作为纵向研究的资源。
该注册表将有机会更好地了解出生后需要专科护理的大量且不断增长的儿童的健康和未来结果。这些数据将产生可转化的证据，并为 GenV 之后的独立持续临床质量注册表奠定基础。
