cCMV Register

Cytomegalovirus (CMV) is a common virus that circulates virtually unnoticed in our community. CMV can be transmitted from mother to the unborn child. We know that this virus affects each baby differently and there is still much to learn about the long-term outcomes of congenital infection.
The Australasian Congenital Cytomegalovirus (ACMVR) is a confidential research database 
of information about people with cCMV.
The aim of the ACMVR is to be a resource for future research about cCMV, specifically:
  • To better understand the impact of cCMV over time
  • To understand the use and outcomes of antiviral therapies given up to 1 year of age
  • To investigate risk factors and identif
  • y potential avenues for prevention
  • To contribute to and/or link with other datasets
  • To provide a sampling frame for future research

About us

The ACMVR is a database of clinical information about children with confirmed cCMV born or living across Australia and New Zealand.

The establishment of the ACMVR will assist researchers to learn more about this important and little studied virus.

Information collected about each child with cCMV includes their birth details, parent demographics, any associated impairments e.g. hearing impairments and where possible information about the child’s developmental progress at 12 months, 24 months, 36 months and 60 months of age.

If your child is under 18 years of age and has a diagnosis of cCMV and was born in or is now living in New South Wales, Queensland or Victoria then they are eligible to be included in the ACMVR.

Register custodians

The ACMVR was established by study leads Prof Cheryl Jones, The University of Sydney, A/Prof Asha Bowen, Telethon Kids and Dr Hayley Smithers-Sheedy, Cerebral Palsy Alliance, The University of Sydney. Each participating Australian site functions independently and collaborates together to contribute anonymised data to the ACMVR.

Thank you to our sponsor

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Contact us

For more information about the ACMVR please contact the study investigators at 

This study has been approved by the Sydney Children’s Hospitals Network (SCHN) HREC (approval number 2020/ETH00090). If you have any concerns or complaints about any aspect of the project or the way it is being conducted, you may contact the Executive Officer of the SCHN HREC on (02) 9845 1253 or

Contact the study investigators


Cerebral Palsy Alliance, The University of Sydney

A/Prof Hayley Smithers-Sheedy
Phone: (02) 9479 7200, email: at

Cerebral Palsy Alliance logo
The University of Sydney logo
CMV Australia logo

New South Wales

The Children’s Hospital at Westmead, The University of Sydney

A/Prof Philip Britton

The Children's Hospital at Westmead logo
The University of Sydney logo

Sydney Children’s Hospital Randwick, The University of Sydney

Prof Pam Palasanthiran

Sydney Children's Hospital Randwick logo
UNSW logo


Murdoch Children’s Research Institute, The University of Melbourne

A/Prof Valerie Sung

Murdoch Children's Research Institute logo
The University of Melbourne logo


Queensland Children’s Hospital, The University of Queensland

A/Prof Julia Clark

The University of Queensland logo

Western Australia

Perth Children’s Hospital

A/Prof Asha Bowen

New Zealand Partners

Starship Children’s Hospital

Dr Elizabeth Wilson and Dr Rachel Webb

Starship logo
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cCMV resources