Congenital cytomegalovirus surveillance in the United States

Abstract

Background Congenital cytomegalovirus (cCMV) is not a nationally notifiable condition, and little is known about how U.S. health departments (HDs) currently conduct cCMV surveillance. Methods We surveyed U.S. HDs that conduct cCMV surveillance or screening activities identified through a web‐based assessment. Meetings were held with each HD to enhance our understanding of survey responses. Results Ten states are systematically collecting cCMV case data to track cCMV cases during early infancy and to provide resources and services to families. Cases are ascertained using cCMV diagnostic codes, reported diagnosis, or laboratory results. Data elements collected for each case include demographics (all 10 states), clinical signs (8 states), laboratory data (4 states), treatment (4 states), and long‐term outcomes (1 state). Annual number of cases reported by HDs ranged from 3 to 47 cases/year in seven states, which was much lower than the expected number of cCMV cases. All 10 HDs have the ability to analyze data collected and four disseminate findings. Major challenges of surveillance reported by HDs were lack of standardized case definitions, personnel constraints, and limited funding. Conclusions A comprehensive account of cCMV disease burden is severely limited by low case ascertainment and paucity of data on long‐term outcomes. A standardized public health case definition for cCMV would improve consistency in measuring disease prevalence across jurisdictions and over time. Surveillance for cCMV has the potential to increase disease awareness and inform strategies to prevent cCMV‐associated disabilities.

Early childhood outcomes of NICU graduates with cytomegalovirus infection in California

“…Among VLBW infants, we observed higher reporting rates among those born to Hispanic mothers and Asian or Pacific Islander mothers. Although our study does not distinguish congenital from postnatal infection, unpublished national data indicate ~90% of infants tested for CMV in the NICU had specimens collected within 21 days of life (Raines et al, 2023). A prior study in California noted higher prevalence of congenital CMV infection among infants born to Hispanic and Black mothers (Kharrazi et al, 2010).…”

“…The work from the CPQCC and HRIF program may be informative to the wider implementation of congenital CMV surveillance efforts by health departments. Only 10 U.S. states conduct congenital CMV surveillance and case definitions are not standardized (Raines et al, 2022). Collecting data on clinical signs at birth, laboratory results, including specimen type, age at specimen collection, and testing methods, and outcomes such as hearing loss, would be important to accurately classify cases of congenital CMV and document the disease burden.…”