Identifying Research Priorities for the Prevention and Early Management of Congenital Cytomegalovirus (CMV) in Australia and New Zealand: A Modified Delphi Consensus Informed by Lived Experience

Identifying Research Priorities for the Prevention and Early Management of Congenital Cytomegalovirus (CMV) in Australia and New Zealand: A Modified Delphi Consensus Informed by Lived Experience | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Identifying Research Priorities for the Prevention and Early Management of Congenital Cytomegalovirus (CMV) in Australia and New Zealand: A Modified Delphi Consensus Informed by Lived Experience Katherine Swinburn, Lisa Hui, Sarah McIntyre, Philip N Britton, and 6 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-9709413/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Objectives To identify and prioritise research questions for prevention and management of congenital cytomegalovirus (CMV) in Australia and New Zealand, in partnership with people with lived experience (PWLE). Design: Online, modified Delphi study Setting: Three online surveys distributed between June and November 2025 Participants: Adults (≥ 18 years) living or working in Australia or New Zealand who self-identified as: 1) having lived experience of congenital CMV; and/or 2) Professionals, including clinicians, researchers and public health/policy experts with knowledge of/an interest in congenital CMV. Main outcomes measures: Ranked, consensus-based research priorities for the prevention and management of congenital CMV with three rounds of sampling. Results A total of 142 people participated (28 PWLE and 114 professionals), submitting 419 individual research questions in Round 1. After Rounds 2 and 3, final consensus on 65 high priority research questions was achieved. Priority research categories common to both PWLE and professionals included: vaccine development, raising CMV awareness, antenatal CMV screening, maternal treatment after CMV infection, fetal prognosis and neonatal screening. PWLE ranked maternal treatments to prevent fetal infection as their top priority, while professionals prioritised vaccine development. Research questions uniquely identified by PWLE focused on family support across the lifespan and the need for clear, compassionate information about potential CMV treatment options and outcomes. Conclusions Our results provide a clear roadmap to drive research, policy action, and advocacy for congenital CMV in Australia and New Zealand, as identified by PWLE and professionals. Aligning research investment with these lived experience informed priorities will improve research impact and outcomes for children and families. Maternal & Fetal Medicine Obstetrics & Gynecology Health Policy Infectious Diseases Pediatrics General Practice congenital cytomegalovirus research priorities Delphi study lived experience antenatal screening maternal treatment. Figures Figure 1 Figure 2 Figure 3 Introduction Cytomegalovirus (CMV) is a common herpesvirus transmitted through direct contact with infected bodily fluids such as saliva and urine. Congenital CMV infection is a significant cause of childhood neurodevelopmental disabilities including sensorineural hearing loss (SNHL), epilepsy and cerebral palsy [ 1 – 5 ]. The estimated global prevalence of congenital CMV is 0.6%, making it the most common congenital infection [ 1 ]. Whilst Australian and New Zealand prevalence data are lacking, estimates from similar high-income countries suggest that annually in Australia, more than 1800 infants are likely born with congenital CMV, of whom approximately 400 will go on to have lifelong disability [ 1 , 3 , 4 ]. The contribution of congenital CMV to infant mortality, hearing loss and neurodevelopmental disability is likely to be considerably higher than current published estimates, however in the absence of universal newborn screening, the overall public health impact of congenital CMV remains poorly quantified [ 5 ]. The prevention and management of congenital CMV are complex and multifaceted. It encompasses primary, secondary and tertiary strategies (Fig. 1 ), implemented from periconception to infancy and from laboratory-based research to public health campaigns. Research to date has made some inroads in improving outcomes for children with congenital CMV by investigating the utility of maternal hygiene counselling [ 6 , 7 ], antenatal serological screening and treatment [ 8 , 9 ], public awareness and education [ 7 , 10 ], CMV vaccination [ 11 – 13 ], antiviral therapies [ 14 – 15 ], and newborn and infant screening [ 16 ]. However, despite the clear need to address pregnancy loss and lifelong disability caused by congenital CMV, Australia and New Zealand still lack a national or regional research agenda. There is a pressing need to bring together fragmented research efforts, in partnership with people with lived experience (PWLE) of congenital CMV, to advance our progress in reducing the impacts of CMV. This study aimed to identify consensus-based research priorities for the prevention and early management of congenital CMV infection and disease in Australia and New Zealand. Methods This study was conducted by an interdisciplinary team of health professionals, researchers and PWLE, with support from an Advisory Committee of CMV experts. Members of the Advisory Committee were selected for their diverse professional backgrounds and track record of scientific excellence or for their lived experience. A modified Delphi methodology was developed and conducted in partnership with PWLE to systematically identify consensus opinion amongst a broad group of stakeholders. The Delphi method is defined as the procedure of asking a panel of experts for their opinion on an issue, summarising and presenting their collective responses and repeating this process iteratively to determine consensus [ 17 ]. Participants This study involved two groups of participants who self-identified as either: 1) People with lived experience of congenital CMV; or 2) Professionals: clinicians, researchers, and public health and policy experts with knowledge of and/or an interest in congenital CMV. All participants were at least 18 years old, able to provide information in English and living and/or working in Australia and New Zealand. Advisory Committee members and investigators were also eligible to participate, except for two investigators (KS and SMc) who analysed the blinded survey data. Recruitment Participants were recruited from June 2025 to November 2025 through a national Congenital CMV Symposium, professional and consumer networks, study advertisements distributed via a CMV parent advocacy organisation [ 18 ] and an e-newsletter [ 19 ], as well as a dedicated, publicly available webpage built and hosted by Cerebral Palsy Alliance [ 20 ]. Direct invitations were emailed to eligible families on the NSW/ACT Cerebral Palsy Register and promoted through the Australasian Congenital CMV Register [ 21 ]. Snowball sampling was used to broaden recruitment. Surveys and meetings A three-round online modified Delphi survey was employed in this study (Appendix 1), with professionals and PWLE responding to separate surveys. This method is conventionally considered sufficient to reach consensus while minimising respondent fatigue and the risk of participant attrition [ 22 ]. While this study retained core Delphi features of iterative surveys and structured feedback across three rounds, it was modified to include online consultation meetings for PWLE between Round 1 and Round 2 surveys (Appendix 1). The meetings were facilitated by a researcher (KS) and a team member with lived experience of congenital CMV (PR). These meetings provided participants with the opportunity to discuss their opinions about the research questions identified in the Round I survey. Participants who attended these meetings were reimbursed for their time (AUD $ 50 voucher). Data Analysis Survey data were collected and managed using REDCap electronic data capture tools, stored on The University of Sydney servers [ 23 , 24 ]. Responses were analysed by two investigators (KS and SMc). Responses from PWLE of congenital CMV were analysed separately to the professionals, to ensure the views of PWLE were preserved. Duplicate questions were either merged (to ensure the wording encompassed the intent of both/all questions) or removed. A literature review was then conducted using PubMed and Google Scholar (KS). Questions identified as already answered were reviewed by the Advisory Committee and then excluded if redundant. For both participant groups, consensus was defined as ≥ 75% of participants rating a question within the same priority category (high: 6–7; medium: 4–5; low: 1–3) on a Likert scale, with an interquartile range ≤ 1. Questions reaching low priority consensus were excluded. Questions failing to reach consensus in Round 2 were re-rated in Round 3, then discarded if consensus was still not met. Remaining priority questions were ranked by mean score and categorised using deductive content analysis. The categories were developed by the authors based on reproductive stage (pre-pregnancy, antenatal, newborn, childhood) and key intervention or evidence gap (e.g. CMV awareness, antenatal screening, maternal treatment). The University of Sydney Human Research Ethics Committee (2024/HE001863) provided ethical approval for this study. The DELPHISTAR (Delphi studies in social and health sciences–recommendations for an interdisciplinary standardised reporting) guidelines were used in reporting of the study findings [ 25 ]. Results The results of the three Delphi Rounds are summarised in Fig. 2 . A total of 142 participants (28 PWLE and 114 professionals) submitted 419 individual research questions (58 by PWLE and 361 by professionals) in Round 1. Participant demographic characteristics for Round one are summarised in Table 1 and remained similar across all three rounds (Appendix 2). Table 1. Demographic characteristics of PWLE and professional participants in Round one Professionals People with lived experience n = 114 n = 28 Location Australia 106 28 New Zealand 7 0 Did not respond 1 0 Gender Male 19 1 Female 95 27 Ethnicity – New Zealand New Zealand European 8 0 Māori 0 0 Ethnicity - Australia Aboriginal and/or Torres Strait Islander 1 0 Non-Indigenous 71 22 Prefer not to say 42 6 Main language spoken at home English 108 27 Other 5 1 Prefer not to say 1 0 Area of professional expertise* Lived experience of CMV Clinical care 85 Parent/caregiver 18 Clinical research 52 Grandparent 2 Public health 47 Sibling of someone impacted by CMV 0 Epidemiology 33 Personally impacted by CMV 6 Public policy 28 Other 2 Basic science research 23 Other 3 Years of Professional Practice Age Group PWLE 0–5 years 3 18–29 years 0 6–10 years 12 30–39 years 19 11–15 years 17 40–49 years 3 15 + years 64 50–59 years 3 N/A 8 60 + years 3 Clinical Background Paediatrician 21 General Practitioner 20 Midwife 17 Infectious Disease Specialist 17 Obstetrician/Gynaecologist 10 Allied Health 9 Laboratory Scientist 6 Virologist 5 Other^ All < 5 Other^: Audiologist, Neonatologist, Ear, nose and throat physician and Clinical Psychologist *Categories are not mutually exclusive Eleven PWLE attended an online consultation meeting between Round 1 and 2. Following Round 3 (Oct-Nov 2025) in which 15 PWLE and 45 professionals participated, a total of 65 research questions reached consensus as ‘high’ priority (35 for PWLE and 30 for professionals) (Fig. 2 ). Overall, PWLE and professionals identified several shared research priority categories including vaccine development, CMV awareness, antenatal screening, maternal treatment, fetal prognosis and neonatal screening and care pathways as their highest priorities. Within these shared areas, the specific research questions they identified reflected different emphases. Specifically, PWLE ranked maternal treatments to prevent fetal infection as their top priority category, while professionals prioritised vaccine development (Fig. 3 and Appendix 3). All 65 high priority research questions are listed in order of importance in Appendix 3. Research questions identified uniquely by PWLE were associated with practical and immediate care needs such as decision-making and psychosocial support of families following a CMV diagnosis. Examples include: “What supports do families need when facing challenging ethical decisions after a CMV diagnosis in pregnancy (e.g. termination for medical reasons)?” “ What is the lived experience of children impacted by cCMV?” “What evidence can be gathered across all ages and stages to support informed decision making?” Questions unique to professionals focussed on system-level and scientific concerns such as antenatal screening models, clinical treatment pathways and prognostic biomarker. Examples included: “Can we identify and implement a uniform standard of practice re CMV screening, detection, treatment and response across hospitals and health clinics to ensure all pregnant women have opportunities and support to make informed choices? “ What systems are required to ensure that GPs counsel pregnant women, those planning a pregnancy and their families about CMV prevention in pregnancy?” “Can we develop a predictive model to estimate the risk of long-term outcomes like cerebral palsy, hearing loss, or microcephaly following a fetal cCMV diagnosis, to support informed pregnancy decisions and reduce uncertainty?” Professionals from New Zealand identified similar priorities to their Australian counterparts; that is, the acceptability, feasibility and cost effectiveness of antenatal screening, CMV awareness, vaccine development and research on long-term outcomes for babies born with CMV. Understanding the local prevalence of congenital CMV was also a priority for New Zealand professionals. Discussion This is the first study to systematically identify research priorities for prevention and early management of congenital CMV in Australia and New Zealand, establishing a clear roadmap to drive research, policy, and advocacy. Using a modified Delphi methodology, this study identified 65 individual high priority research questions from which emerged the following priority categories: vaccine development, raising CMV awareness, antenatal CMV screening, maternal treatment after CMV infection, fetal prognosis and neonatal screening. For PWLE, the top priority category was maternal treatments to prevent fetal infection, while professionals prioritised vaccine development. Research questions uniquely identified by PWLE focused on family support across the lifespan and the need for clear, compassionate information about CMV treatment options and potential outcomes. There were strong areas of alignment between PWLE and professionals. Both groups prioritised CMV awareness and education, reflecting current evidence that shows low public and professional awareness remains a major barrier to risk reduction counselling and timely diagnosis globally [ 26 ]. PWLE identified the question, “How can maternity health professionals gain the knowledge and confidence needed to routinely counsel families about CMV?” as a top priority. This consolidates previous reports that pregnant women view maternity health professionals as their most trusted source of health information [ 7 , 9 , 10 ] and that inadequate CMV antenatal and/or pre-pregnancy counselling from their clinicians can heighten the shock and anxiety that is felt following a CMV diagnosis [ 9 , 27 ]. Interestingly, professionals, prioritised public health messaging to improve CMV knowledge at scale. This likely reflects findings from Australian and international studies indicating that limited antenatal consultation time is an important barrier to dissemination [ 27 , 28 ]. Together, these awareness priorities reflect the need to strengthen CMV education at both individual clinical and public health levels in Australia and New Zealand. Both professionals and PWLE emphasised the importance of antenatal screening, an area in which international practice is changing rapidly. Evidence now shows early detection of maternal infection in pregnancy and treatment with prompt high dose maternal valaciclovir therapy in the first trimester can reduce the rate of fetal infection [ 29 , 30 ]. This has prompted new European recommendations endorsing universal antenatal screening at repeated time points in the first trimester [ 31 , 32 ], with multiple individual jurisdictions embarking on screening programs [ 33 – 35 ]. Australian Pregnancy Care Guidelines recommend CMV IgG screening for women at increased risk of infection, but do not address repeat screening for IgG negative women [ 36 ] — a key mechanism for early detection of primary infection in the first trimester. Recent Australian research has demonstrated high patient satisfaction and a significant reduction in anxiety with a structured antenatal CMV screening protocol [ 37 ]. Against this backdrop, our study delivers a critical contribution by identifying antenatal CMV screening as a top research priority for PWLE and professionals in Australia and New Zealand. PWLE and professionals both prioritised research questions associated with maternal treatment following CMV infection, specifically concerning fetal safety, antiviral treatment efficacy, and optimal clinical pathways. Randomised controlled trial data [ 29 ] and systematic review evidence [ 30 ] have demonstrated the effectiveness of maternal valaciclovir in reducing the risk of fetal infection, resulting in updates to international clinical practice guidelines [ 31 , 32 ]. Although international studies are comparing new treatment regimens [ 14 , 38 ], more evidence is needed to determine the most effective management pathways and to understand the long-term impacts of antenatal antiviral therapy exposure on childhood outcomes [ 39 ]. Both PWLE and professionals identified vaccine development as a key priority, with professionals ranking it highest overall. Currently there is no licensed CMV vaccine. Recent reports that an mRNA CMV vaccine candidate did not meet its primary endpoint in a Phase III trial [ 12 ] reinforces both the continued, urgent need for vaccine research and the global relevance of this priority. The complex biology of CMV has made vaccine development difficult, despite decades of effort. Experts agree that even a partly effective vaccine would be likely to reduce congenital disease caused by CMV and have a major global public health impact [ 11 ]. Research priorities identified by both PWLE and professionals emphasised the need to establish a cost effective neonatal CMV screening model suitable for Australia and New Zealand, supported by accessible, standardised care pathways for children diagnosed with congenital CMV. While the evidence on implementing targeted screening through newborn hearing screening programs is robust, the cost-effectiveness and ethical implications of universal congenital CMV screening, where a significant proportion of affected newborns will remain asymptomatic throughout life, require further clarification [ 16 , 40 , 41 ]. These gaps signal a critical implementation barrier: without evidence, scalable screening models and consistent care pathways, Australia and New Zealand cannot deliver equitable early detection or optimise long-term outcomes for children with congenital CMV. It is important to recognise that access to healthcare resources and infrastructure, as well as cultural practices and attitudes toward pregnancy and childbirth, vary widely across Australia and New Zealand. Cultural beliefs related to pregnancy and childrearing influence how care is accessed, understood, and accepted. Flexible, culturally safe and context-specific pathways and protocols will be required that can reflect local realities and avoid exacerbating existing inequities. Valuable insights can be gained from reflecting on the distinct priorities identified by each participant group. Professionals prioritised questions about scientific research and health system improvements, such as standardised screening models, clinical pathways and prognostic biomarkers, consistent with their role in supporting individuals and population-level system improvements. In contrast, PWLE prioritised emotional and practical family support across the lifespan, a deeper understanding of the lived experience of affected children and the need for clear, compassionate information about CMV diagnosis, testing, and treatment options. These questions were not asked by professionals, yet are critical to research development, to ensure acceptability, equity, and uptake of screening and treatment. They directly address aspects of care that influence decision making, psychological safety, and real-world engagement for families. Given their important contribution and alignment with qualitative findings from PWLE in other Australian and international studies [ 9 , 42 ], these priorities should be elevated and resourced. Strengths and limitations The most significant strength of this study was the partnership with PWLE across the lifespan of the project. Our involvement of PWLE as advisory committee members, investigators, and participants ensured identification of research priorities that are relevant and acceptable to the community, aligning with the Australian Government’s commitment to meaningful consumer engagement in health and medical research [ 43 ]. Other strengths of this study were the high response rates of groups across Rounds 2 and 3, and the use of online surveys which enabled broad, low-cost participation. New Zealand participants were intentionally included in this study in consideration of the bi-national professional (Royal Australian and New Zealand College of Obstetricians and Gynaecologists) and family advocacy (CMV Association) [ 18 ] organisations. Study limitations included challenges inherent to the modified Delphi method, such as participant representativeness. The ‘general public’ and pregnant people without lived experience of congenital CMV were not participants in this study. Their perspectives on population-based approaches such as antenatal and newborn screening will be important in future research, given the impact of these interventions on the wider pregnant population. The generalisability of our findings could be improved by purposive sampling of groups who were underrepresented in this study, including male health professionals and PWLE, more people from New Zealand, migrant backgrounds, Aboriginal and Torres Strait Islander communities and other health professionals such as audiologists, neurologists and neonatologists (Table 1 and Appendix 2). Limiting participation to Australia and New Zealand narrowed the breadth of perspectives, but this was intentional to reduce effects of the distinct regional differences in CMV epidemiology, healthcare funding structures and maternity care systems globally. Conclusion This modified Delphi study undertaken in two countries, provides a timely, evidence-based roadmap to guide future congenital CMV research and investment. It recognises the unique insights of PWLE and the value of genuine partnerships with cross-disciplinary professionals. 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Supplementary Files CMVAppendix1.docx Appendix 1: Overview of the Delphi study process CMVAppendix3.docx Appendix 3: A complete list of the 65 high priority consensus research questions for PWLE and professionals, listed in order of importance. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-9709413","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":640042310,"identity":"25f67502-5e5c-4ea5-bf2d-9d96330db505","order_by":0,"name":"Katherine Swinburn","email":"data:image/png;base64,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","orcid":"https://orcid.org/0009-0000-5664-7338","institution":"Cerebral Palsy Alliance","correspondingAuthor":true,"prefix":"","firstName":"Katherine","middleName":"","lastName":"Swinburn","suffix":""},{"id":640042311,"identity":"681d91da-6b4a-410a-aaac-e993ea4dffd9","order_by":1,"name":"Lisa Hui","email":"","orcid":"","institution":"The University of Melbourne","correspondingAuthor":false,"prefix":"","firstName":"Lisa","middleName":"","lastName":"Hui","suffix":""},{"id":640042312,"identity":"6aab1cd6-45ae-4fe1-8e5c-28f14b1a1562","order_by":2,"name":"Sarah McIntyre","email":"","orcid":"","institution":"Cerebral Palsy Alliance","correspondingAuthor":false,"prefix":"","firstName":"Sarah","middleName":"","lastName":"McIntyre","suffix":""},{"id":640042313,"identity":"59e1188e-fb5b-4555-b5e9-e3a4e76dfc2b","order_by":3,"name":"Philip N Britton","email":"","orcid":"","institution":"The University of Sydney","correspondingAuthor":false,"prefix":"","firstName":"Philip","middleName":"N","lastName":"Britton","suffix":""},{"id":640042314,"identity":"a3ddba6e-500d-46fe-bb7c-cd01836d639b","order_by":4,"name":"Pamela Rogers","email":"","orcid":"","institution":"CP Quest","correspondingAuthor":false,"prefix":"","firstName":"Pamela","middleName":"","lastName":"Rogers","suffix":""},{"id":640042315,"identity":"d8b89770-22e8-4418-be33-3f61898301ea","order_by":5,"name":"Antonia Shand","email":"","orcid":"","institution":"The University of Sydney","correspondingAuthor":false,"prefix":"","firstName":"Antonia","middleName":"","lastName":"Shand","suffix":""},{"id":640042316,"identity":"b0cd5c84-e765-471c-a606-dc09a1f282ba","order_by":6,"name":"Valerie Sung","email":"","orcid":"","institution":"The University of Melbourne","correspondingAuthor":false,"prefix":"","firstName":"Valerie","middleName":"","lastName":"Sung","suffix":""},{"id":640042317,"identity":"8e89b4f3-d5fc-4e88-ac1b-cbf08124336b","order_by":7,"name":"William Rawlinson","email":"","orcid":"","institution":"The University of New South Wales","correspondingAuthor":false,"prefix":"","firstName":"William","middleName":"","lastName":"Rawlinson","suffix":""},{"id":640042318,"identity":"d9cb495a-f197-4bb9-971d-0c19ed436c5b","order_by":8,"name":"Holly Teagle","email":"","orcid":"","institution":"University of Auckland","correspondingAuthor":false,"prefix":"","firstName":"Holly","middleName":"","lastName":"Teagle","suffix":""},{"id":640042319,"identity":"330b6786-71ba-45fc-b1fb-f4b759bffc6f","order_by":9,"name":"Hayley Smithers-Sheedy","email":"","orcid":"","institution":"Cerebral Palsy Alliance","correspondingAuthor":false,"prefix":"","firstName":"Hayley","middleName":"","lastName":"Smithers-Sheedy","suffix":""}],"badges":[],"createdAt":"2026-05-14 04:02:14","currentVersionCode":1,"declarations":{"humanSubjects":true,"vertebrateSubjects":false,"conflictsOfInterestStatement":false,"humanSubjectEthicalGuidelines":true,"humanSubjectConsent":true,"humanSubjectClinicalTrial":false,"humanSubjectCaseReport":false,"vertebrateSubjectEthicalGuidelines":false},"doi":"10.21203/rs.3.rs-9709413/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-9709413/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":109304205,"identity":"cee26087-6406-4233-9963-060caba53f28","added_by":"auto","created_at":"2026-05-15 09:46:10","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":74375,"visible":true,"origin":"","legend":"\u003cp\u003eCurrent primary, secondary and tertiary prevention and treatment opportunities for congenital CMV infection\u003c/p\u003e","description":"","filename":"CMVFigure1.jpg","url":"https://assets-eu.researchsquare.com/files/rs-9709413/v1/1f7f6255f69c867136a09362.jpg"},{"id":109405761,"identity":"db411ad9-4440-41aa-8949-9b2c6c43cf96","added_by":"auto","created_at":"2026-05-17 13:20:06","extension":"jpg","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":86182,"visible":true,"origin":"","legend":"\u003cp\u003eSummary of Round 1-3 results for PWLE and professionals\u003c/p\u003e","description":"","filename":"CMVFigure2.jpg","url":"https://assets-eu.researchsquare.com/files/rs-9709413/v1/d5660b0b96d693d816562603.jpg"},{"id":109304208,"identity":"b44f27ca-da32-49ed-b7b8-9f267d80e366","added_by":"auto","created_at":"2026-05-15 09:46:11","extension":"jpg","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":3337897,"visible":true,"origin":"","legend":"\u003cp\u003eConcept map of highest priority research question/s per category, for PWLE and professionals, ranked by mean.\u003c/p\u003e","description":"","filename":"CMVFigure3.jpg","url":"https://assets-eu.researchsquare.com/files/rs-9709413/v1/a894fe46071e30f0e3b10e80.jpg"},{"id":109304206,"identity":"cd5887c3-6d44-4c06-8670-c1b026f23191","added_by":"auto","created_at":"2026-05-15 09:46:11","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":51030,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eAppendix 1\u003c/strong\u003e: Overview of the Delphi study process\u003c/p\u003e","description":"","filename":"CMVAppendix1.docx","url":"https://assets-eu.researchsquare.com/files/rs-9709413/v1/7c8407e8d7213d6256fd636b.docx"},{"id":109304210,"identity":"188ce475-8381-454c-ab9c-b27cec091b7b","added_by":"auto","created_at":"2026-05-15 09:46:11","extension":"docx","order_by":3,"title":"","display":"","copyAsset":false,"role":"supplement","size":48770,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eAppendix 3\u003c/strong\u003e: A complete list of the 65 high priority consensus research questions for PWLE and professionals, listed in order of importance.\u003c/p\u003e","description":"","filename":"CMVAppendix3.docx","url":"https://assets-eu.researchsquare.com/files/rs-9709413/v1/86f797e70f45f7ce8e3afbf8.docx"}],"financialInterests":"The authors declare no competing interests.","formattedTitle":"\u003cp\u003e\u003cstrong\u003eIdentifying Research Priorities for the Prevention and Early Management of Congenital Cytomegalovirus (CMV) in Australia and New Zealand: A Modified Delphi Consensus Informed by Lived Experience\u003c/strong\u003e\u003c/p\u003e","fulltext":[{"header":"Introduction","content":"\u003cp\u003eCytomegalovirus (CMV) is a common herpesvirus transmitted through direct contact with infected bodily fluids such as saliva and urine. Congenital CMV infection is a significant cause of childhood neurodevelopmental disabilities including sensorineural hearing loss (SNHL), epilepsy and cerebral palsy [\u003cspan additionalcitationids=\"CR2 CR3 CR4\" citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. The estimated global prevalence of congenital CMV is 0.6%, making it the most common congenital infection [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. Whilst Australian and New Zealand prevalence data are lacking, estimates from similar high-income countries suggest that annually in Australia, more than 1800 infants are likely born with congenital CMV, of whom approximately 400 will go on to have lifelong disability [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. The contribution of congenital CMV to infant mortality, hearing loss and neurodevelopmental disability is likely to be considerably higher than current published estimates, however in the absence of universal newborn screening, the overall public health impact of congenital CMV remains poorly quantified [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe prevention and management of congenital CMV are complex and multifaceted. It encompasses primary, secondary and tertiary strategies (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e), implemented from periconception to infancy and from laboratory-based research to public health campaigns. Research to date has made some inroads in improving outcomes for children with congenital CMV by investigating the utility of maternal hygiene counselling [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e], antenatal serological screening and treatment [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e], public awareness and education [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e], CMV vaccination [\u003cspan additionalcitationids=\"CR12\" citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e], antiviral therapies [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e], and newborn and infant screening [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. However, despite the clear need to address pregnancy loss and lifelong disability caused by congenital CMV, Australia and New Zealand still lack a national or regional research agenda. There is a pressing need to bring together fragmented research efforts, in partnership with people with lived experience (PWLE) of congenital CMV, to advance our progress in reducing the impacts of CMV. This study aimed to identify consensus-based research priorities for the prevention and early management of congenital CMV infection and disease in Australia and New Zealand.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eThis study was conducted by an interdisciplinary team of health professionals, researchers and PWLE, with support from an Advisory Committee of CMV experts. Members of the Advisory Committee were selected for their diverse professional backgrounds and track record of scientific excellence or for their lived experience.\u003c/p\u003e \u003cp\u003eA modified Delphi methodology was developed and conducted in partnership with PWLE to systematically identify consensus opinion amongst a broad group of stakeholders. The Delphi method is defined as the procedure of asking a panel of experts for their opinion on an issue, summarising and presenting their collective responses and repeating this process iteratively to determine consensus [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e].\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eParticipants\u003c/h2\u003e \u003cp\u003eThis study involved two groups of participants who self-identified as either:\u003c/p\u003e \u003cp\u003e1) People with lived experience of congenital CMV; or\u003c/p\u003e \u003cp\u003e2) Professionals: clinicians, researchers, and public health and policy experts with knowledge of and/or an interest in congenital CMV.\u003c/p\u003e \u003cp\u003eAll participants were at least 18 years old, able to provide information in English and living and/or working in Australia and New Zealand.\u003c/p\u003e \u003cp\u003eAdvisory Committee members and investigators were also eligible to participate, except for two investigators (KS and SMc) who analysed the blinded survey data.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eRecruitment\u003c/h3\u003e\n\u003cp\u003eParticipants were recruited from June 2025 to November 2025 through a national Congenital CMV Symposium, professional and consumer networks, study advertisements distributed via a CMV parent advocacy organisation [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e] and an e-newsletter [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e], as well as a dedicated, publicly available webpage built and hosted by Cerebral Palsy Alliance [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e]. Direct invitations were emailed to eligible families on the NSW/ACT Cerebral Palsy Register and promoted through the Australasian Congenital CMV Register [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. Snowball sampling was used to broaden recruitment.\u003c/p\u003e\n\u003ch3\u003eSurveys and meetings\u003c/h3\u003e\n\u003cp\u003eA three-round online modified Delphi survey was employed in this study (Appendix 1), with professionals and PWLE responding to separate surveys. This method is conventionally considered sufficient to reach consensus while minimising respondent fatigue and the risk of participant attrition [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eWhile this study retained core Delphi features of iterative surveys and structured feedback across three rounds, it was modified to include online consultation meetings for PWLE between Round 1 and Round 2 surveys (Appendix 1). The meetings were facilitated by a researcher (KS) and a team member with lived experience of congenital CMV (PR). These meetings provided participants with the opportunity to discuss their opinions about the research questions identified in the Round I survey. Participants who attended these meetings were reimbursed for their time (AUD\u003cspan\u003e$\u003c/span\u003e50 voucher).\u003c/p\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eData Analysis\u003c/h2\u003e \u003cp\u003eSurvey data were collected and managed using REDCap electronic data capture tools, stored on The University of Sydney servers [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. Responses were analysed by two investigators (KS and SMc). Responses from PWLE of congenital CMV were analysed separately to the professionals, to ensure the views of PWLE were preserved. Duplicate questions were either merged (to ensure the wording encompassed the intent of both/all questions) or removed. A literature review was then conducted using PubMed and Google Scholar (KS). Questions identified as already answered were reviewed by the Advisory Committee and then excluded if redundant.\u003c/p\u003e \u003cp\u003eFor both participant groups, consensus was defined as \u0026ge;\u0026thinsp;75% of participants rating a question within the same priority category (high: 6\u0026ndash;7; medium: 4\u0026ndash;5; low: 1\u0026ndash;3) on a Likert scale, with an interquartile range\u0026thinsp;\u0026le;\u0026thinsp;1. Questions reaching low priority consensus were excluded. Questions failing to reach consensus in Round 2 were re-rated in Round 3, then discarded if consensus was still not met. Remaining priority questions were ranked by mean score and categorised using deductive content analysis. The categories were developed by the authors based on reproductive stage (pre-pregnancy, antenatal, newborn, childhood) and key intervention or evidence gap (e.g. CMV awareness, antenatal screening, maternal treatment).\u003c/p\u003e \u003cp\u003e The University of Sydney Human Research Ethics Committee (2024/HE001863) provided ethical approval for this study. The DELPHISTAR (Delphi studies in social and health sciences\u0026ndash;recommendations for an interdisciplinary standardised reporting) guidelines were used in reporting of the study findings [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e].\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003eThe results of the three Delphi Rounds are summarised in Fig.\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e. A total of 142 participants (28 PWLE and 114 professionals) submitted 419 individual research questions (58 by PWLE and 361 by professionals) in Round 1. Participant demographic characteristics for Round one are summarised in Table\u0026nbsp;1 and remained similar across all three rounds (Appendix 2).\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv class=\"gridtable\"\u003e\n\u003cdiv class=\"colspec\" align=\"left\"\u003e\u003cstrong\u003eTable\u0026nbsp;1.\u003c/strong\u003e Demographic characteristics of PWLE and professional participants in Round one\u003c/div\u003e\n\u003cdiv class=\"colspec\" align=\"char\"\u003e\u0026nbsp;\u003c/div\u003e\n\u003ctable id=\"Taba\" border=\"1\"\u003e\n\u003cthead\u003e\n\u003ctr\u003e\n\u003cth rowspan=\"2\" align=\"left\"\u003e\u0026nbsp;\u003c/th\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003eProfessionals\u003c/p\u003e\n\u003c/th\u003e\n\u003cth colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003ePeople with lived experience\u003c/p\u003e\n\u003c/th\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003en\u0026thinsp;=\u0026thinsp;114\u003c/p\u003e\n\u003c/th\u003e\n\u003cth colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003en\u0026thinsp;=\u0026thinsp;28\u003c/p\u003e\n\u003c/th\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003eLocation\u003c/p\u003e\n\u003c/th\u003e\n\u003cth align=\"left\"\u003e\u0026nbsp;\u003c/th\u003e\n\u003cth align=\"left\"\u003e\u0026nbsp;\u003c/th\u003e\n\u003cth align=\"left\"\u003e\u0026nbsp;\u003c/th\u003e\n\u003c/tr\u003e\n\u003c/thead\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eAustralia\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e106\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e28\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eNew Zealand\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e7\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e0\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eDid not respond\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e1\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e0\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eGender\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eMale\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e19\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e1\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eFemale\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e95\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e27\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eEthnicity \u0026ndash; New Zealand\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eNew Zealand European\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e8\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e0\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eMāori\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e0\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e0\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eEthnicity - Australia\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eAboriginal and/or Torres Strait Islander\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e1\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e0\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eNon-Indigenous\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e71\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e22\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePrefer not to say\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e42\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e6\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eMain language spoken at home\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eEnglish\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e108\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e27\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eOther\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e5\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e1\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePrefer not to say\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e1\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e0\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eArea of professional expertise*\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eLived experience of CMV\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eClinical care\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e85\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eParent/caregiver\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e18\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eClinical research\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e52\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eGrandparent\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e2\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePublic health\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e47\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eSibling of someone impacted by CMV\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e0\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eEpidemiology\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e33\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePersonally impacted by CMV\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e6\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePublic policy\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e28\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eOther\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e2\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eBasic science research\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e23\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eOther\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e3\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eYears of Professional Practice\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eAge Group PWLE\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e0\u0026ndash;5 years\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e3\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e18\u0026ndash;29 years\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e0\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e6\u0026ndash;10 years\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e12\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e30\u0026ndash;39 years\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e19\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e11\u0026ndash;15 years\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e17\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e40\u0026ndash;49 years\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e3\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e15\u0026thinsp;+\u0026thinsp;years\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e64\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e50\u0026ndash;59 years\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e3\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eN/A\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e8\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e60\u0026thinsp;+\u0026thinsp;years\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"char\" char=\".\"\u003e\n\u003cp\u003e3\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eClinical Background\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePaediatrician\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e21\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eGeneral Practitioner\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e20\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eMidwife\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e17\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eInfectious Disease Specialist\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e17\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eObstetrician/Gynaecologist\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e10\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eAllied Health\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e9\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eLaboratory Scientist\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e6\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eVirologist\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e5\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eOther^\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eAll \u0026lt;\u0026thinsp;5\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003c/tbody\u003e\n\u003ctfoot\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"4\"\u003eOther^: Audiologist, Neonatologist, Ear, nose and throat physician and Clinical Psychologist\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"4\"\u003e*Categories are not mutually exclusive\u003c/td\u003e\n\u003c/tr\u003e\n\u003c/tfoot\u003e\n\u003c/table\u003e\n\u003c/div\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003eEleven PWLE attended an online consultation meeting between Round 1 and 2. Following Round 3 (Oct-Nov 2025) in which 15 PWLE and 45 professionals participated, a total of 65 research questions reached consensus as \u0026lsquo;high\u0026rsquo; priority (35 for PWLE and 30 for professionals) (Fig.\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eOverall, PWLE and professionals identified several shared research priority categories including vaccine development, CMV awareness, antenatal screening, maternal treatment, fetal prognosis and neonatal screening and care pathways as their highest priorities. Within these shared areas, the specific research questions they identified reflected different emphases. Specifically, PWLE ranked maternal treatments to prevent fetal infection as their top priority category, while professionals prioritised vaccine development (Fig.\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e3\u003c/span\u003e and Appendix 3). All 65 high priority research questions are listed in order of importance in Appendix 3.\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eResearch questions identified uniquely by PWLE were associated with practical and immediate care needs such as decision-making and psychosocial support of families following a CMV diagnosis. Examples include:\u003c/p\u003e\n\u003cul\u003e\n\u003cli\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;What supports do families need when facing challenging ethical decisions after a CMV diagnosis in pregnancy (e.g. termination for medical reasons)?\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003c/li\u003e\n\u003cli\u003e\n\u003cp\u003e\u0026ldquo;\u003cem\u003eWhat is the lived experience of children impacted by cCMV?\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003c/li\u003e\n\u003cli\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;What evidence can be gathered across all ages and stages to support informed decision making?\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eQuestions unique to professionals focussed on system-level and scientific concerns such as antenatal screening models, clinical treatment pathways and prognostic biomarker. Examples included:\u003c/p\u003e\n\u003cul\u003e\n\u003cli\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Can we identify and implement a uniform standard of practice re CMV screening, detection, treatment and response across hospitals and health clinics to ensure all pregnant women have opportunities and support to make informed choices?\u003c/em\u003e\u003c/p\u003e\n\u003c/li\u003e\n\u003cli\u003e\n\u003cp\u003e\u0026ldquo;\u003cem\u003eWhat systems are required to ensure that GPs counsel pregnant women, those planning a pregnancy and their families about CMV prevention in pregnancy?\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003c/li\u003e\n\u003cli\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Can we develop a predictive model to estimate the risk of long-term outcomes like cerebral palsy, hearing loss, or microcephaly following a fetal cCMV diagnosis, to support informed pregnancy decisions and reduce uncertainty?\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eProfessionals from New Zealand identified similar priorities to their Australian counterparts; that is, the acceptability, feasibility and cost effectiveness of antenatal screening, CMV awareness, vaccine development and research on long-term outcomes for babies born with CMV. Understanding the local prevalence of congenital CMV was also a priority for New Zealand professionals.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis is the first study to systematically identify research priorities for prevention and early management of congenital CMV in Australia and New Zealand, establishing a clear roadmap to drive research, policy, and advocacy. Using a modified Delphi methodology, this study identified 65 individual high priority research questions from which emerged the following priority categories: vaccine development, raising CMV awareness, antenatal CMV screening, maternal treatment after CMV infection, fetal prognosis and neonatal screening. For PWLE, the top priority category was maternal treatments to prevent fetal infection, while professionals prioritised vaccine development. Research questions uniquely identified by PWLE focused on family support across the lifespan and the need for clear, compassionate information about CMV treatment options and potential outcomes.\u003c/p\u003e \u003cp\u003eThere were strong areas of alignment between PWLE and professionals. Both groups prioritised CMV awareness and education, reflecting current evidence that shows low public and professional awareness remains a major barrier to risk reduction counselling and timely diagnosis globally [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]. PWLE identified the question, \u003cem\u003e\u0026ldquo;How can maternity health professionals gain the knowledge and confidence needed to routinely counsel families about CMV?\u0026rdquo;\u003c/em\u003e as a top priority. This consolidates previous reports that pregnant women view maternity health professionals as their most trusted source of health information [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e] and that inadequate CMV antenatal and/or pre-pregnancy counselling from their clinicians can heighten the shock and anxiety that is felt following a CMV diagnosis [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]. Interestingly, professionals, prioritised public health messaging to improve CMV knowledge at scale. This likely reflects findings from Australian and international studies indicating that limited antenatal consultation time is an important barrier to dissemination [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. Together, these awareness priorities reflect the need to strengthen CMV education at both individual clinical and public health levels in Australia and New Zealand.\u003c/p\u003e \u003cp\u003eBoth professionals and PWLE emphasised the importance of antenatal screening, an area in which international practice is changing rapidly. Evidence now shows early detection of maternal infection in pregnancy and treatment with prompt high dose maternal valaciclovir therapy in the first trimester can reduce the rate of fetal infection [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e, \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e]. This has prompted new European recommendations endorsing universal antenatal screening at repeated time points in the first trimester [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e], with multiple individual jurisdictions embarking on screening programs [\u003cspan additionalcitationids=\"CR34\" citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e]. Australian Pregnancy Care Guidelines recommend CMV IgG screening for women at increased risk of infection, but do not address repeat screening for IgG negative women [\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e] \u0026mdash; a key mechanism for early detection of primary infection in the first trimester. Recent Australian research has demonstrated high patient satisfaction and a significant reduction in anxiety with a structured antenatal CMV screening protocol [\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e]. Against this backdrop, our study delivers a critical contribution by identifying antenatal CMV screening as a top research priority for PWLE and professionals in Australia and New Zealand.\u003c/p\u003e \u003cp\u003ePWLE and professionals both prioritised research questions associated with maternal treatment following CMV infection, specifically concerning fetal safety, antiviral treatment efficacy, and optimal clinical pathways. Randomised controlled trial data [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e] and systematic review evidence [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e] have demonstrated the effectiveness of maternal valaciclovir in reducing the risk of fetal infection, resulting in updates to international clinical practice guidelines [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e]. Although international studies are comparing new treatment regimens [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e], more evidence is needed to determine the most effective management pathways and to understand the long-term impacts of antenatal antiviral therapy exposure on childhood outcomes [\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eBoth PWLE and professionals identified vaccine development as a key priority, with professionals ranking it highest overall. Currently there is no licensed CMV vaccine. Recent reports that an mRNA CMV vaccine candidate did not meet its primary endpoint in a Phase III trial [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e] reinforces both the continued, urgent need for vaccine research and the global relevance of this priority. The complex biology of CMV has made vaccine development difficult, despite decades of effort. Experts agree that even a partly effective vaccine would be likely to reduce congenital disease caused by CMV and have a major global public health impact [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eResearch priorities identified by both PWLE and professionals emphasised the need to establish a cost effective neonatal CMV screening model suitable for Australia and New Zealand, supported by accessible, standardised care pathways for children diagnosed with congenital CMV. While the evidence on implementing targeted screening through newborn hearing screening programs is robust, the cost-effectiveness and ethical implications of universal congenital CMV screening, where a significant proportion of affected newborns will remain asymptomatic throughout life, require further clarification [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e, \u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e]. These gaps signal a critical implementation barrier: without evidence, scalable screening models and consistent care pathways, Australia and New Zealand cannot deliver equitable early detection or optimise long-term outcomes for children with congenital CMV.\u003c/p\u003e \u003cp\u003eIt is important to recognise that access to healthcare resources and infrastructure, as well as cultural practices and attitudes toward pregnancy and childbirth, vary widely across Australia and New Zealand. Cultural beliefs related to pregnancy and childrearing influence how care is accessed, understood, and accepted. Flexible, culturally safe and context-specific pathways and protocols will be required that can reflect local realities and avoid exacerbating existing inequities.\u003c/p\u003e \u003cp\u003eValuable insights can be gained from reflecting on the distinct priorities identified by each participant group. Professionals prioritised questions about scientific research and health system improvements, such as standardised screening models, clinical pathways and prognostic biomarkers, consistent with their role in supporting individuals and population-level system improvements. In contrast, PWLE prioritised emotional and practical family support across the lifespan, a deeper understanding of the lived experience of affected children and the need for clear, compassionate information about CMV diagnosis, testing, and treatment options. These questions were not asked by professionals, yet are critical to research development, to ensure acceptability, equity, and uptake of screening and treatment. They directly address aspects of care that influence decision making, psychological safety, and real-world engagement for families. Given their important contribution and alignment with qualitative findings from PWLE in other Australian and international studies [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e], these priorities should be elevated and resourced.\u003c/p\u003e\n\u003ch3\u003eStrengths and limitations\u003c/h3\u003e\n\u003cp\u003eThe most significant strength of this study was the partnership with PWLE across the lifespan of the project. Our involvement of PWLE as advisory committee members, investigators, and participants ensured identification of research priorities that are relevant and acceptable to the community, aligning with the Australian Government\u0026rsquo;s commitment to meaningful consumer engagement in health and medical research [\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e]. Other strengths of this study were the high response rates of groups across Rounds 2 and 3, and the use of online surveys which enabled broad, low-cost participation. New Zealand participants were intentionally included in this study in consideration of the bi-national professional (Royal Australian and New Zealand College of Obstetricians and Gynaecologists) and family advocacy (CMV Association) [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e] organisations.\u003c/p\u003e \u003cp\u003eStudy limitations included challenges inherent to the modified Delphi method, such as participant representativeness. The \u0026lsquo;general public\u0026rsquo; and pregnant people without lived experience of congenital CMV were not participants in this study. Their perspectives on population-based approaches such as antenatal and newborn screening will be important in future research, given the impact of these interventions on the wider pregnant population. The generalisability of our findings could be improved by purposive sampling of groups who were underrepresented in this study, including male health professionals and PWLE, more people from New Zealand, migrant backgrounds, Aboriginal and Torres Strait Islander communities and other health professionals such as audiologists, neurologists and neonatologists (Table\u0026nbsp;1 and Appendix 2).\u003c/p\u003e \u003cp\u003eLimiting participation to Australia and New Zealand narrowed the breadth of perspectives, but this was intentional to reduce effects of the distinct regional differences in CMV epidemiology, healthcare funding structures and maternity care systems globally.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003e This modified Delphi study undertaken in two countries, provides a timely, evidence-based roadmap to guide future congenital CMV research and investment. It recognises the unique insights of PWLE and the value of genuine partnerships with cross-disciplinary professionals. Dedicated, nationally coordinated funding responses are now required to address these agreed research priorities, particularly in prevention, early detection, and maternal treatment in both Australia and New Zealand. Aligning research investment with PWLE-informed consensus priorities will accelerate translation into clinical practice and policy, ultimately improving outcomes for children and families.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eSsentongo P, Hehnly C, Birungi P et al (2021) Congenital Cytomegalovirus Infection Burden and Epidemiologic Risk Factors in Countries With Universal Screening: A Systematic Review and Meta-analysis. 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J Maternal Fetal Neonatal Med 35(25):6566\u0026ndash;6575. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1080/14767058.2021.1918088\u003c/span\u003e\u003cspan address=\"10.1080/14767058.2021.1918088\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMontague A, Vandrevala T, Calvert A et al (2022) Experiences of pregnant women and healthcare professionals of participating in a digital antenatal CMV education intervention. 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Lancet Reg Health \u0026ndash; Europe 40. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/j.lanepe.2024.100892\u003c/span\u003e\u003cspan address=\"10.1016/j.lanepe.2024.100892\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eOrnaghi S, Fernicola F, Carletti V et al Screening of Cytomegalovirus Infection in Pregnant Women. Recommendation by the Italian National Institute of Health and Ministry of Health, December 2023. Prenat Diagn \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1002/pd.70095\u003c/span\u003e\u003cspan address=\"10.1002/pd.70095\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAra R, Mevorach Zussman N, Sammut T et al (2025) Antenatal CMV screening, testing, and treatment strategies in Europe: a 2024 survey. J Maternal-Fetal Neonatal Med 38:1\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eS\u0026aacute;nchez-Dur\u0026aacute;n M\u0026Aacute;, Esperalba J, Scazzocchio E et al (2026) Universal Cytomegalovirus Screening in the First Trimester of Pregnancy: The Multicentre Observational Cohort Study in the Area of Barcelona (CITEMB Study). BJOG: Int J Obstet Gynecol 1\u0026ndash;9. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1111/1471-0528.70137\u003c/span\u003e\u003cspan address=\"10.1111/1471-0528.70137\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003evan Vliet M, Boudewyns A, Keymeulen A, Vlieghe E, Vanden Driessche K (2024) Screening frequency for congenital cytomegalovirus in Flanders, Belgium \u0026ndash; a multicentre retrospective study. Acta Clin Belg 79(6):403\u0026ndash;412\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAustralian Living Evidence Collaboration, Australian Pregnancy Care Guidelines (2025) November Accessed February 06, 2026. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://livingevidence.org.au/livingguidelines/leapp/\u003c/span\u003e\u003cspan address=\"https://livingevidence.org.au/livingguidelines/leapp/\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTripathi T, Watson J, Holmes N, McCoy J, Stump H, Hui L (2025) Feasibility, acceptability, and psychological impact of CMV prevention education and two-step serological screening in pregnancy, \u003cem\u003eResearch Square\u003c/em\u003e. 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Int J Neonatal Screen 9(2):30. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.3390/ijns9020030\u003c/span\u003e\u003cspan address=\"10.3390/ijns9020030\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAustralian Government National Health and Medical Research Council, Statement on Consumer and Community involvement in Health and Medical Research, National Health and Medical Research Council (2016) Consumers Health Forum of Australia. Available from: consumer-community-involvement.pdf\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"highlight":"","institution":"Cerebral Palsy Alliance","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"congenital cytomegalovirus, research priorities, Delphi study, lived experience, antenatal screening, maternal treatment.","lastPublishedDoi":"10.21203/rs.3.rs-9709413/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-9709413/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eObjectives\u003c/h2\u003e \u003cp\u003eTo identify and prioritise research questions for prevention and management of congenital cytomegalovirus (CMV) in Australia and New Zealand, in partnership with people with lived experience (PWLE).\u003c/p\u003e\u003ch2\u003eDesign:\u003c/h2\u003e \u003cp\u003eOnline, modified Delphi study\u003c/p\u003e\u003ch2\u003eSetting:\u003c/h2\u003e \u003cp\u003eThree online surveys distributed between June and November 2025\u003c/p\u003e\u003ch2\u003eParticipants:\u003c/h2\u003e \u003cp\u003eAdults (\u0026ge;\u0026thinsp;18 years) living or working in Australia or New Zealand who self-identified as: 1) having lived experience of congenital CMV; and/or 2) Professionals, including clinicians, researchers and public health/policy experts with knowledge of/an interest in congenital CMV.\u003c/p\u003e\u003ch2\u003eMain outcomes measures:\u003c/h2\u003e \u003cp\u003eRanked, consensus-based research priorities for the prevention and management of congenital CMV with three rounds of sampling.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eA total of 142 people participated (28 PWLE and 114 professionals), submitting 419 individual research questions in Round 1. After Rounds 2 and 3, final consensus on 65 high priority research questions was achieved. Priority research categories common to both PWLE and professionals included: vaccine development, raising CMV awareness, antenatal CMV screening, maternal treatment after CMV infection, fetal prognosis and neonatal screening. PWLE ranked maternal treatments to prevent fetal infection as their top priority, while professionals prioritised vaccine development. Research questions uniquely identified by PWLE focused on family support across the lifespan and the need for clear, compassionate information about potential CMV treatment options and outcomes.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eOur results provide a clear roadmap to drive research, policy action, and advocacy for congenital CMV in Australia and New Zealand, as identified by PWLE and professionals. Aligning research investment with these lived experience informed priorities will improve research impact and outcomes for children and families.\u003c/p\u003e","manuscriptTitle":"Identifying Research Priorities for the Prevention and Early Management of Congenital Cytomegalovirus (CMV) in Australia and New Zealand: A Modified Delphi Consensus Informed by Lived Experience","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-05-15 09:46:04","doi":"10.21203/rs.3.rs-9709413/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"825fbb81-d727-42df-99c4-31ba458ca55c","owner":[],"postedDate":"May 15th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[{"id":68118767,"name":"Maternal \u0026 Fetal Medicine"},{"id":68118768,"name":"Obstetrics \u0026 Gynecology"},{"id":68118769,"name":"Health Policy"},{"id":68118770,"name":"Infectious Diseases"},{"id":68118771,"name":"Pediatrics"},{"id":68118772,"name":"General Practice"}],"tags":[],"updatedAt":"2026-05-15T09:46:05+00:00","versionOfRecord":[],"versionCreatedAt":"2026-05-15 09:46:04","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-9709413","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-9709413","identity":"rs-9709413","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}