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 – will launch later in 2022
Perth Children’s Hospital and Wesfarmers Centre for Vaccines and Infectious Diseases, Telethon Kids Institute, The University of Western Australia
A/Prof Asher 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
cCMV resources
cCMV resources are located here: https://cerebralpalsy.org.au/cmv/