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 Register (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 identify 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

ACMVR

Cerebral Palsy Alliance, The University of Sydney

Dr Hayley Smithers-Sheedy
Phone: (02) 9479 7200, email: at acmvregister@cerebralpalsy.org.au

New South Wales

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

Dr Phillip Britton

Sydney Children’s Hospital Randwick, The University of Sydney

Prof Pam Palasanthiran

Victoria

Murdoch Children’s Research Institute, The University of Melbourne

Dr Valerie Sung

Queensland

Queensland Children’s Hospital, The University of Queensland

A/Prof Julia Clarke

Western Australia

Perth Children’s Hospital

A/Prof Asha Bowen

New Zealand Partners

Starship Children’s Hospital

Dr Elizabeth Wilson and Dr Rachel Webb

Contact us

For more information about the ACMVR please contact the study investigators at acmvregister@cerebralpalsy.org.au

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 SCHN-Ethics@health.nsw.gov.au

contact the study investigators