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. 2023 Jan 1;115(1):11-20.
doi: 10.1002/bdr2.2098. Epub 2022 Oct 3.

Congenital cytomegalovirus surveillance in the United States

Kelley Raines  1 , Kristen Nichols Heitman  2 , Jessica Leung  2 , Kate R Woodworth  3 , Van T Tong  3 , David E Sugerman  2 , Tatiana M Lanzieri  2
Affiliations

Congenital cytomegalovirus surveillance in the United States

Kelley Raines et al. Birth Defects Res. .

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.

Keywords: United States; congenital cytomegalovirus; cytomegalovirus; surveillance.

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References

REFERENCES

    1. Bartlett, A. W., Hall, B. M., Palasanthiran, P., McMullan, B., Shand, A. W., & Rawlinson, W. D. (2018). Recognition, treatment, and sequelae of congenital cytomegalovirus in Australia: An observational study. Journal of Clinical Virology, 108, 121-125. https://doi.org/10.1016/j.jcv.2018.09.017
    1. Campione, A., Lanzieri, T. M., Ricotta, E., Grosse, S. D., Kadri, S. S., Nussenblatt, V., & Prevots, D. R. (2021). Missing diagnoses of congenital cytomegalovirus infection in electronic health records for infants with laboratory-confirmed infection. Current Medical Research and Opinion, 1-3, 273-275. https://doi.org/10.1080/03007995.2021.2006536
    1. Department of Pediatrics (2021). Congenital CMV Disease Research Clinic & Registry. Baylor College of Medicine. https://www.bcm.edu/departments/pediatrics/divisions-and-centers/congeni...
    1. Dollard, S. C., Dreon, M., Hernandez-Alvarado, N., Amin, M. M., Wong, P., Lanzieri, T. M., … Schleiss, M. R. (2021). Sensitivity of dried blood spot testing for detection of congenital cytomegalovirus infection. JAMA Pediatrics, 175(3), e205441. https://doi.org/10.1001/jamapediatrics.2020.5441
    1. Dollard, S. C., Grosse, S. D., & Ross, D. S. (2007). New estimates of the prevalence of neurological and sensory sequelae and mortality associated with congenital cytomegalovirus infection. Reviews in Medical Virology, 17(5), 355-363. https://doi.org/10.1002/rmv.544