The aim of the ACMVR is to be a resource for future research about cCMV, specifically:
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.
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.
Dr Hayley Smithers-Sheedy
Phone: (02) 9479 7200, email: at firstname.lastname@example.org
Dr Phillip Britton
Prof Pam Palasanthiran
Dr Valerie Sung
A/Prof Julia Clarke
A/Prof Asha Bowen
Dr Elizabeth Wilson and Dr Rachel Webb
For more information about the ACMVR please contact the study investigators at email@example.com
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