Virginia Pregnant People-Infant Linked Longitudinal Surveillance - Congenital Cytomegalovirus (cCMV), is the number one non-genetic cause of hearing loss. 1 in 200 children are born with CMV each year, however only 9% of pregnant women who are aware of CMV. Hearing targeted congenital Cytomegalovirus (cCMV) screening has been mandated in Virginia since September 1, 2020, with statutory responsibility under the Virginia Department of Health. This mandate implies that any child who fails the final hearing screen at birth should receive a buccal swab for CMV screening. Virginia has attempted to increase awareness and education around CMV since the legislative mandate, however, has identified a gap in that many prenatal providers are not discussing prevention tips with pregnant women or women of childbearing age. The hearing targeted CMV screening program is under the Office of Family Health services and the Virginia Early Hearing Detection and Intervention Program (VA EHDI). The mission of VA EHDI program is to reduce the burden of communication disorders resulting from hearing loss. The Virginia Early Hearing Detection and Intervention Information System (EHDI-IS) is integrated in a robust, web-based surveillance system which combines multiple state-mandated functions including electronic birth certificate, certifiable birth events, newborn hearing screening, cCMV screening, birth defects reporting, and electronic death registration. This system also identifies matches, collects, and reports data on all individual unduplicated occurrent births in the Commonwealth. One identified gap for the EHDI-IS includes the ability to capture long-term disease and treatment outcomes for children confirmed with cCMV. The purpose of this grant is to expand surveillance efforts to identify longitudinal data regarding cCMV to ensure timely reporting of exposures and outcomes that impact pregnant people and infants. With component B of this funding opportunity, VA EHDI will focus on expanding its long-term statewide cCMV follow-up after a confirmed diagnosis to identify disease outcomes and treatment trajectories. CCMV outcomes to be evaluated include co-occurring symptoms, treatment outcomes, assessing the differences in children who received treatment vs. those that did not, and existing developmental delays attributed to cCMV. This project will additionally retrospectively identify prenatal exposures to inform prenatal education outreach initiatives. The project will achieve the outcome goals using 4 strategies: Data Information System Optimization, Stakeholder Education and Engagement, Data Analysis and Data Dissemination, and Technical Assistance and Quality Improvement.
