032 - The Australasian Congenital Cytomegalovirus (cCMV) Register: outcomes of children with cCMV in Australia

Publication Number: 32.6597

Valerie Sung, Murdoch Children's Research Institute, Royal Children's Hospital, Melbourne, Victoria, Australia; Emma Waight, Cerebral palsy Alliance Research Institute, The University of Sydney, Camperdown, New South Wales, Australia; Asha Bowen, Perth Children's Hospital, Nedlands, Western Australia, Australia; Cheryl A. Jones, UNSW Sydney, UNSW Sydney, New South Wales, Australia; Pamela Palasanthiran, Sydney Children's Hospitals Network, Randwick, Randwick, New South Wales, Australia; Philip N N. Britton, The Childrens Hospital at Westmead, Westmead, New South Wales, Australia; Julia E Clark, Queensland Chidlrens Hospital, Brisbane, Queensland, Australia; sonia Dougherty, CCHR CHQ, South Brisbane, Queensland, Australia; Jordann Davis, The Royal Children's Hospital, Brisbane, Queensland, Australia; Rebecca Burrell, The University of Sydney, Sydney, New South Wales, Australia; Alanna N. Gillespie, Murdoch Children’s Research Institute, Melbourne, Victoria, Australia; Preethi Chandrasekaran, Murdoch Children's Research Institute, Melbourne, Victoria, Australia; Nicole M. Kerly, Sydney Children’s Hospital Randwick; University of NSW, Matraville, New South Wales, Australia; Hayley Smithers-Sheedy, University of Sydney, Sydney, New South Wales, Australia

Background: Congenital cytomegalovirus (cCMV) is the leading infectious cause of newborn disability including sensorineural deafness and cerebral palsy. There is worldwide momentum for targeted and universal cCMV screening in newborns. Evidence on outcomes of cCMV affected children who are asymptomatic or have isolated hearing loss is lacking. Data systems must be developed to capture the long-term outcomes of cCMV to inform management.

Objective: Describe the clinical characteristics and outcomes of children with cCMV participating in the Australasian cCMV Register (ACMVR).

Design/Methods: The ACMVR collects deidentified clinical and neurodevelopmental data of cCMV affected children from five participating hospital sites across four states in Australia. Children were eligible to participate if they have a clinical diagnosis of cCMV and received medical care at any of the study sites. Each study site varied slightly in its approach to recruitment according to local ethics approvals. We used descriptive statistics to report on: neonatal characteristics, newborn hearing screening outcomes, hearing outcomes and use of antiviral therapies for children with cCMV.

Results: A total of 232 children have participated in the ACMVR from October 2020 to August 2024. As completeness of data varied across time points reflecting differences in age at recruitment and availability of data, denominators have been provided. The cohort had 50% (117/232) males, 93% (200/ 216) singletons and 75% (162/215) born at term. Almost all children (87%, 175/200) had clinical signs of infection in the neonatal period with jaundice, intrauterine growth restriction and microcephaly being the most common. Almost half the children (49%, 87/179) did not pass newborn hearing screening and antiviral therapies were prescribed to 63% (55/87) of this group. Amongst children who passed newborn hearing screening 38% (35/92) were prescribed antiviral therapies. By 12 months 11% (10/92) of children who had passed their newborn hearing screening had been identified with late onset hearing loss, six of whom had received antiviral therapy.

Conclusion(s): Our study confirms and highlights the progressive nature of hearing loss in children with cCMV, and the importance of both newborn hearing screening and audiological follow up for all children with congenital CMV. With increasing availability of screening for cCMV through hearing programs, the ACMVR will be a platform to provide future evidence on the outcomes of antiviral therapy in children with isolated hearing loss