Congenital cytomegalovirus (CMV) infection is a significant cause of infant morbidity and a high national priority for development of prevention and treatment strategies. CMV is the most common congenital infection, with incidence of approximately 0.7 percent of live births in the United States (30,000 or 1:150 infants per year). Nearly 20 percent exhibit permanent neurologic disabilities, including hearing loss and severe cognitive or physical impairment. The clinical and economic burden of this infection is comparable to more familiar conditions, such as Down’s syndrome with incidence of approximately 0.14 percent (6,000 or 1:700 infants per year). Advocacy led by family members of affected children has expanded in recent years (see, e.g., https://www.nationalcmv.org). However, progress toward development of effective management strategies has been slow and inefficient, primarily due to limited interaction and coordination among stakeholders. The purpose of our project is to consolidate and leverage the expertise and passion of these stakeholders to create a collaborative congenital CMV partnership and develop a congenital CMV comparative effectiveness research proposal.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.