{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,19]],"date-time":"2025-10-19T00:39:37Z","timestamp":1760834377854,"version":"build-2065373602"},"reference-count":36,"publisher":"BMJ","issue":"6","license":[{"start":{"date-parts":[[2025,6,25]],"date-time":"2025-06-25T00:00:00Z","timestamp":1750809600000},"content-version":"unspecified","delay-in-days":24,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2025,6,16]]},"published-print":{"date-parts":[[2025,6]]},"abstract":"\n Purpose<\/jats:title>\n Congenital cytomegalovirus (cCMV) is an important cause of long-term childhood disability. In Australia, the identification and treatment practices and the long-term clinical and neurodevelopmental outcomes of children with cCMV are unknown. The Australasian cCMV Register (ACMVR) is a longitudinal register and resource for research that aims to describe and explore, in Australian children with cCMV: (1) their clinical characteristics over time, (2) antiviral therapy use\/prescribing up to 1 year of age and (3) risk factors and potential avenues for prevention of adverse sequelae of the virus.<\/jats:p>\n <\/jats:sec>\n \n Participants<\/jats:title>\n Children <18 years, with confirmed or probable cCMV infection, identified via medical records, community referral and physician referrals, in states with active study sites, are eligible for inclusion. The consent process is site-specific, reflecting local requirements and including both explicit consent and opt-out models. Participation in the ACMVR allows local site researchers to (1) collect specified demographic and clinical data from medical records, health professionals and families, (2) recontact parents\/guardians to undertake developmental screening for their child at time-points up to 5 years of age, (3) share information with parents\/guardians about relevant ethically approved research studies and (4) include participant data in ethically approved data linkage studies.<\/jats:p>\n <\/jats:sec>\n \n Findings to date<\/jats:title>\n Ethics and governance approvals, study database and a steering group have been established. Data collection is active in five sites across Australia.<\/jats:p>\n <\/jats:sec>\n \n Future plans<\/jats:title>\n The ACMVR will inform our understanding of the long-term outcomes for children with cCMV in Australia and provide a sampling frame and resource for recruitment in future clinical and epidemiological research to inform practice and policy. New opportunities for the establishment of additional study sites and collaborations with Australian maternity and fetal medicine researchers and with cCMV registries in other countries are currently being explored.<\/jats:p>\n <\/jats:sec>","DOI":"10.1136\/bmjopen-2024-095636","type":"journal-article","created":{"date-parts":[[2025,6,25]],"date-time":"2025-06-25T14:10:38Z","timestamp":1750860638000},"page":"e095636","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":0,"title":["Longitudinal observational research study: establishing the Australasian Congenital Cytomegalovirus Register (ACMVR)"],"prefix":"10.1136","volume":"15","author":[{"ORCID":"https:\/\/orcid.org\/0009-0002-2599-0445","authenticated-orcid":false,"given":"Preethi","family":"Chandrasekaran","sequence":"first","affiliation":[{"name":"Monash Newborn, Monash Children\u2019s Hospital, Melbourne, Victoria, Australia"},{"name":"Murdoch Children\u2019s Research Institute, Melbourne, Victoria, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Asha","family":"Bowen","sequence":"additional","affiliation":[{"name":"Department of Infectious Diseases, Perth Children\u2019s Hospital, Perth, Western Australia, Australia"},{"name":"Wesfarmers Centre for Vaccines and Infectious Diseases, The Kids Research Institute, Perth, Western Australia, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Cheryl A","family":"Jones","sequence":"additional","affiliation":[{"name":"Faculty of Medicine and Health, University of New South Wales, Sydney, New South Wales, Australia"},{"name":"Sydney Children\u2019s Hospitals Network, Sydney, New South Wales, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Valerie","family":"Sung","sequence":"additional","affiliation":[{"name":"Murdoch Children\u2019s Research Institute, Melbourne, Victoria, Australia"},{"name":"Centre for Community Child Health, Royal Children\u2019s Hospital Research Institute, Parkville, Victoria, Australia"},{"name":"Prevention Innovation, Population Health, Murdoch Children\u2019s Research Institute, Parkville, Victoria, Australia"},{"name":"Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Julia E","family":"Clark","sequence":"additional","affiliation":[{"name":"Infection Management and Prevention Service, Queensland Children\u2019s Hospital, Brisbane, Queensland, Australia"},{"name":"Faculty of Medicine, The University of Queensland, Brisbane, Queensland, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2993-6000","authenticated-orcid":false,"given":"P N","family":"Britton","sequence":"additional","affiliation":[{"name":"Department of Infectious Diseases and Microbiology, Faculty of Medicine and Health,The Children's Hospital at Westmead, Sydney Children's Hospital Network, The University of Sydney, Westmead, New South Wales, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Pamela","family":"Palasanthiran","sequence":"additional","affiliation":[{"name":"Department of Immunology and Infectious Disease, Sydney Children's Hospitals Network, School of Women\u2019s and Child Health, University of New South Wales, Randwick, New South Wales, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Emma","family":"Waight","sequence":"additional","affiliation":[{"name":"Cerebral Palsy Alliance Research Institute, Discipline of Child and Adolescent Health, The University of Sydney, The University of Sydney Faculty of Medicine and Health, Sydney, New South Wales, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alanna N","family":"Gillespie","sequence":"additional","affiliation":[{"name":"Murdoch Children\u2019s Research Institute, Melbourne, Victoria, Australia"},{"name":"Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hayley","family":"Smithers Sheedy","sequence":"additional","affiliation":[{"name":"Cerebral Palsy Alliance Research Institute, Discipline of Child and Adolescent Health, The University of Sydney, The University of Sydney Faculty of Medicine and Health, Sydney, New South Wales, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"239","published-online":{"date-parts":[[2025,6,25]]},"reference":[{"key":"2025101813133301000_15.6.e095636.1","doi-asserted-by":"crossref","DOI":"10.1186\/1471-2458-5-70","article-title":"Washing our hands of the congenital cytomegalovirus disease epidemic","volume":"5","author":"Cannon","year":"2005","journal-title":"BMC Public Health"},{"key":"2025101813133301000_15.6.e095636.2","doi-asserted-by":"publisher","DOI":"10.1136\/archdischild-2022-324007"},{"key":"2025101813133301000_15.6.e095636.3","doi-asserted-by":"publisher","DOI":"10.1128\/CMR.00062-12"},{"key":"2025101813133301000_15.6.e095636.4","doi-asserted-by":"publisher","DOI":"10.1016\/j.ajog.2020.02.018"},{"key":"2025101813133301000_15.6.e095636.5","doi-asserted-by":"crossref","DOI":"10.1136\/bmj.n1212","article-title":"Congenital cytomegalovirus infection","volume":"373","author":"Pesch","year":"2021","journal-title":"BMJ"},{"key":"2025101813133301000_15.6.e095636.6","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2016.10.024"},{"key":"2025101813133301000_15.6.e095636.7","unstructured":"National CMV Foundation . Cytomegalovirus (CMV). National CMV Foundation; 2024. Available: https:\/\/www.nationalcmv.org\/"},{"key":"2025101813133301000_15.6.e095636.8","doi-asserted-by":"crossref","first-page":"82","DOI":"10.1016\/j.ejpn.2022.01.019","article-title":"The long-term burden of congenital cytomegalovirus: Hospitalisation and mortality in a population-based matched cohort study","volume":"37","author":"Smithers-Sheedy","year":"2022","journal-title":"Eur J Paediatr Neurol"},{"key":"2025101813133301000_15.6.e095636.9","doi-asserted-by":"crossref","DOI":"10.1001\/jamanetworkopen.2021.20736","article-title":"Congenital Cytomegalovirus Infection Burden and Epidemiologic Risk Factors in Countries With Universal Screening: A Systematic Review and Meta-analysis","volume":"4","author":"Ssentongo","year":"2021","journal-title":"JAMA Netw Open"},{"key":"2025101813133301000_15.6.e095636.10","doi-asserted-by":"crossref","first-page":"625","DOI":"10.5694\/j.1326-5377.2011.tb03144.x","article-title":"Congenital cytomegalovirus--time to diagnosis, management and clinical sequelae in Australia: opportunities for earlier identification","volume":"194","author":"McMullan","year":"2011","journal-title":"Med J Aust"},{"key":"2025101813133301000_15.6.e095636.11","doi-asserted-by":"crossref","first-page":"110594","DOI":"10.1016\/j.ijporl.2020.110594","article-title":"Integrating congenital cytomegalovirus screening within a newborn hearing screening program: Is it worthwhile?","volume":"142","author":"Beswick","year":"2021","journal-title":"Int J Pediatr Otorhinolaryngol"},{"key":"2025101813133301000_15.6.e095636.12","doi-asserted-by":"crossref","DOI":"10.3390\/vaccines8030526","article-title":"Exciting Times for Cytomegalovirus (CMV) Vaccine Development: Navigating the Pathways toward the Goal of Protecting Infants against Congenital CMV Infection","volume":"8","author":"Schleiss","year":"2020","journal-title":"Vaccines (Basel)"},{"key":"2025101813133301000_15.6.e095636.13","doi-asserted-by":"crossref","first-page":"949","DOI":"10.1097\/INF.0000000000002763","article-title":"Prevention of Acquisition of Cytomegalovirus Infection in Pregnancy Through Hygiene-based Behavioral Interventions: A Systematic Review and Gap Analysis","volume":"39","author":"Barber","year":"2020","journal-title":"Pediatr Infect Dis J"},{"key":"2025101813133301000_15.6.e095636.14","doi-asserted-by":"crossref","first-page":"1205","DOI":"10.1016\/j.ebiom.2015.08.003","article-title":"Prevention of Primary Cytomegalovirus Infection in Pregnancy","volume":"2","author":"Revello","year":"2015","journal-title":"EBioMedicine"},{"key":"2025101813133301000_15.6.e095636.15","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcv.2009.09.003"},{"key":"2025101813133301000_15.6.e095636.16","unstructured":"Royal Australian and New Zealand College of Obstetricians and Gynaecologists . Prevention of congenital cytomeglovirus infection. College Statement; 2019."},{"key":"2025101813133301000_15.6.e095636.17","doi-asserted-by":"publisher","DOI":"10.1016\/S1473-3099(17)30143-3"},{"key":"2025101813133301000_15.6.e095636.18","doi-asserted-by":"crossref","first-page":"445","DOI":"10.1111\/ajo.13500","article-title":"eLearning significantly improves maternity professionals\u2019 knowledge of the congenital cytomegalovirus prevention guidelines","volume":"62","author":"Smithers\u2010Sheedy","year":"2022","journal-title":"Aust NZ J Obst Gynaeco"},{"key":"2025101813133301000_15.6.e095636.19","doi-asserted-by":"crossref","first-page":"843","DOI":"10.1111\/ajo.12978","article-title":"Knowledge of congenital cytomegalovirus (CMV) in pregnant women in Australia is low, and improved with education","volume":"59","author":"Lazzaro","year":"2019","journal-title":"Aust NZ J Obst Gynaeco"},{"key":"2025101813133301000_15.6.e095636.20","doi-asserted-by":"crossref","first-page":"109","DOI":"10.1016\/j.ajog.2023.07.022","article-title":"The effect of valacyclovir on secondary prevention of congenital cytomegalovirus infection, following primary maternal infection acquired periconceptionally or in the first trimester of pregnancy. An individual patient data meta-analysis","volume":"230","author":"Chatzakis","year":"2024","journal-title":"Am J Obstet Gynecol"},{"key":"2025101813133301000_15.6.e095636.21","doi-asserted-by":"crossref","DOI":"10.1016\/j.lanepe.2024.100892","article-title":"Consensus recommendation for prenatal, neonatal and postnatal management of congenital cytomegalovirus infection from the European congenital infection initiative (ECCI)","volume":"40","author":"Leruez-Ville","year":"2024","journal-title":"Lancet Reg Health Eur"},{"key":"2025101813133301000_15.6.e095636.22","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa1404599"},{"key":"2025101813133301000_15.6.e095636.23","doi-asserted-by":"crossref","first-page":"494","DOI":"10.1097\/QCO.0000000000001067","article-title":"Prenatal and postnatal antiviral therapies for the prevention and treatment of congenital cytomegalovirus infections","volume":"37","author":"Chandrasekaran","year":"2024","journal-title":"Curr Opin Infect Dis"},{"key":"2025101813133301000_15.6.e095636.24","unstructured":"American academy of pediatrics red book: 2024\u20132027 report of the committee on infectious diseases."},{"key":"2025101813133301000_15.6.e095636.25","doi-asserted-by":"publisher","DOI":"10.1097\/INF.0000000000001763"},{"key":"2025101813133301000_15.6.e095636.26","doi-asserted-by":"crossref","first-page":"113945","DOI":"10.1016\/j.jpeds.2024.113945","article-title":"Valganciclovir in Infants with Hearing Loss and Clinically Inapparent Congenital Cytomegalovirus Infection: A Nonrandomized Controlled Trial","volume":"268","author":"Chung","year":"2024","journal-title":"J Pediatr"},{"key":"2025101813133301000_15.6.e095636.27","doi-asserted-by":"crossref","first-page":"1430","DOI":"10.1002\/ohn.670","article-title":"Congenital Cytomegalovirus Testing Outcomes From the ValEAR Trial","volume":"170","author":"Orb","year":"2024","journal-title":"Otolaryngol Head Neck Surg"},{"key":"2025101813133301000_15.6.e095636.28","doi-asserted-by":"crossref","DOI":"10.3390\/ijns9020017","article-title":"A Cross-Sectional Survey of Pediatric Infectious Disease Physicians\u2019 Approach to Congenital Cytomegalovirus Infection","volume":"9","author":"Hoki","year":"2023","journal-title":"Int J Neonatal Screen"},{"key":"2025101813133301000_15.6.e095636.29","doi-asserted-by":"crossref","first-page":"379","DOI":"10.1093\/jpids\/piac034","article-title":"Ganciclovir and Valganciclovir Use Among Infants With Congenital Cytomegalovirus: Data From a Multicenter Electronic Health Record Dataset in the United States","volume":"11","author":"Leung","year":"2022","journal-title":"J Pediatric Infect Dis Soc"},{"key":"2025101813133301000_15.6.e095636.30","unstructured":"Nunez C , Elliott EJ TS . Australian paediatric surveillance unit study information sheet congenital cytomegalovirus (CMV) infection."},{"key":"2025101813133301000_15.6.e095636.31","unstructured":"CCMVNET.org. 2024 Available: https:\/\/ccmvnet.org\/"},{"key":"2025101813133301000_15.6.e095636.32","unstructured":"National Statement on Ethical Conduct in Human Research 2023 . Canberra act 2601, australian capital territory. National Health and Medical Research Council; 2023."},{"key":"2025101813133301000_15.6.e095636.33","unstructured":"Squires J , Bricker D . Ages & Stages Questionnaires, Third Edition (ASQ-3): A Parent-Completed Child Monitoring System. Baltimore: Paul H. Brookes Publishing Co., Inc,"},{"key":"2025101813133301000_15.6.e095636.34","first-page":"21","article-title":"The Australasian Congenital Cytomegalovirus Register: Demographics, clinical characteristics and antiviral use","volume":"66","author":"Chandrasekaran","year":"2024","journal-title":"Dev Med Ch Neurol"},{"key":"2025101813133301000_15.6.e095636.35","first-page":"77","article-title":"The Australian Congenital Cytomegalovirus Register (ACMVR): Demographics Clinical Characteristics and Antiviral Use","volume":"61","author":"Chandrasekaran","year":"2025","journal-title":"J Paeds Ch Health"},{"key":"2025101813133301000_15.6.e095636.36","unstructured":"ANCHOR: australian national child hearing health outcomes registry - murdoch children\u2019s research. 2024. Available: https:\/\/www.mcri.edu.au\/research\/projects\/anchor"}],"container-title":["BMJ Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/bmjopen-2024-095636","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,18]],"date-time":"2025-10-18T20:13:40Z","timestamp":1760818420000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmjopen.bmj.com\/lookup\/doi\/10.1136\/bmjopen-2024-095636"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,6]]},"references-count":36,"journal-issue":{"issue":"6","published-online":{"date-parts":[[2025,6,25]]},"published-print":{"date-parts":[[2025,6]]}},"alternative-id":["10.1136\/bmjopen-2024-095636"],"URL":"https:\/\/doi.org\/10.1136\/bmjopen-2024-095636","relation":{},"ISSN":["2044-6055","2044-6055"],"issn-type":[{"type":"print","value":"2044-6055"},{"type":"electronic","value":"2044-6055"}],"subject":[],"published":{"date-parts":[[2025,6]]}}}