Cytomegalovirus (CMV) infection during pregnancy may result in long-term health problems for children with congenital CMV (cCMV). Currently, no prevention or treatment interventions are approved by the Food and Drug Administration for a cCMV indication. Healthcare provider and public awareness is low, and formal clinical practice guidelines and local practice patterns vary. A pilot study of eight cCMV experts was performed using qualitative semi-structured interviews to better understand clinical practice guidelines and patterns in the United States. Results from participant interviews highlighted the need for better prenatal diagnostic techniques, broader neonatal screening opportunities, and more robust evidence supporting intervention strategies. Healthcare provider and public partnerships are essential for advancing cCMV guidelines and improving care delivery. Our results provide a preliminary knowledge base and framework for developing a consensus cCMV research agenda to address evidence gaps that limit the revision of clinical practice guidelines. The changes in clinical practice patterns that may arise as a result of further research have the potential to reduce risk during pregnancy and improve care for children with cCMV infection.

Objective: The objective of this study was to assess the economic family spillover effects of childhood congenital cytomegalovirus (cCMV) in the US. Methods: This cross-sectional, Web-based study collected economic and health-state utility data between August 2024 and April 2025 using three surveys targeting caregivers of children with cCMV, children with cCMV, and their siblings. Results: Respondents included 227 caregivers, 211 children with cCMV, and 173 siblings. A high economic burden on families of children with cCMV was reported, including total mean annual costs (out-of-pocket medical and personal care expenses and work- or productivity-related costs) of $83,140 and lifetime out-of-pocket home adaptation/specialized schooling costs of $4713. The mean caregiver EQ-5D-5L utility score was 0.86, which is comparable to US general-population norms. Mean Health Utilities Indexes Mark 2 and 3 scores varied within the ranges of 0.38–0.83 and 0.03–0.73, respectively, among children with cCMV. Adult siblings reported a mean EQ-5D-5L utility of 0.90. Siblings aged 4–7 and 8–17 years reported mean EQ-5D-Y-3L utilities of 0.90 and 0.92, respectively. Conclusions: This is the first study to report the family spillover effects of caring for children with cCMV in the US. The results confirm a considerable, multifaceted burden experienced by children with cCMV and their families, spanning health-state utility and economic strains.