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Published on: July 6, 2013
Congenital cytomegalovirus surveillance in the United States
Kelley Raines1, Kristen Nichols Heitman2, Jessica Leung2
1ASRT, Inc., Contracting agency to the Division of Viral Diseases, National Center for Immunization and Respiratory Diseases, Centers for Disease Control and Prevention, Atlanta, Georgia, USA.
Insights
Congenital cytomegalovirus (cCMV) surveillance is inconsistent across U.S. health departments, with low case ascertainment and limited data on long-term outcomes. Standardizing definitions could improve cCMV disease burden tracking and prevention strategies.
Area of Science:
- Public Health
- Infectious Disease Surveillance
- Pediatric Health
Background:
- Congenital cytomegalovirus (cCMV) is not a nationally notifiable disease.
- Current cCMV surveillance practices by U.S. health departments (HDs) are largely unknown.
- Understanding existing surveillance methods is crucial for improving public health responses.
Purpose of the Study:
- To assess current cCMV surveillance and screening activities in U.S. HDs.
- To identify challenges and limitations in cCMV data collection and reporting.
- To inform strategies for enhancing cCMV surveillance and disease prevention.
Main Methods:
- Survey of U.S. HDs involved in cCMV surveillance or screening.
- Web-based assessment to identify participating HDs.
- Follow-up meetings with HDs to clarify survey responses and gather in-depth information.
Main Results:
- Ten states systematically collect cCMV case data, using diagnostic codes, reported diagnoses, or lab results.
- Data elements vary, with demographics collected by all states, but long-term outcomes by only one.
- Reported cases (3-47/year) are significantly lower than expected, highlighting low ascertainment.
- Key challenges include lack of standardized case definitions, limited personnel, and funding constraints.
Conclusions:
- Incomplete cCMV case ascertainment and limited long-term outcome data hinder accurate disease burden assessment.
- A standardized public health case definition is essential for consistent cCMV prevalence measurement.
- Improved surveillance can increase awareness and guide strategies to prevent cCMV-associated disabilities.
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.
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