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Longitudinal observational research study: establishing the Australasian Congenital Cytomegalovirus Register (ACMVR)

Por: Chandrasekaran · P. · Bowen · A. · Jones · C. A. · Sung · V. · Clark · J. E. · Britton · P. N. · Palasanthiran · P. · Waight · E. · Gillespie · A. N. · Smithers Sheedy · H. · ACMVR Group · ACMVR · Jones · Bowen · Smithers-Sheedy · Sung · Clark · Britton · Palasanthiran · Waight · Cha
Purpose

Congenital cytomegalovirus (cCMV) is an important cause of long-term childhood disability. In Australia, the identification and treatment practices and the long-term clinical and neurodevelopmental outcomes of children with cCMV are unknown. The Australasian cCMV Register (ACMVR) is a longitudinal register and resource for research that aims to describe and explore, in Australian children with cCMV: (1) their clinical characteristics over time, (2) antiviral therapy use/prescribing up to 1 year of age and (3) risk factors and potential avenues for prevention of adverse sequelae of the virus.

Participants

Children

Findings to date

Ethics and governance approvals, study database and a steering group have been established. Data collection is active in five sites across Australia.

Future plans

The ACMVR will inform our understanding of the long-term outcomes for children with cCMV in Australia and provide a sampling frame and resource for recruitment in future clinical and epidemiological research to inform practice and policy. New opportunities for the establishment of additional study sites and collaborations with Australian maternity and fetal medicine researchers and with cCMV registries in other countries are currently being explored.

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