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/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 syndrome with incidence of approximately 0.14 percent (6,000 or 1:700 infants/year). Advocacy led by family members of affected children has expanded in recent years (e.g., www.nationalcmv.org). However, progress toward development of effective management strategies has been slow and inefficient, primarily due to limited interaction and coordination of all stakeholders.
The purpose of our project is to consolidate and leverage the expertise and passion of these stakeholders, including community members (e.g., parents/families, pregnant or childbearing age women), care providers (e.g., physicians, audiologists), clinical or basic science researchers, care coordinators, educators, policy makers and legislators, healthcare institutions, health insurance companies, and others. We propose a broad and inclusive process to provide a strong foundation for Tier II and III projects. For Tier I, we have the following goals: 1) build a collaborative partnership among stakeholders, and expand the knowledge and skills of participants necessary for achieving longer-term goals, 2) explore the creation of a national “congenital CMV network,” and 3) generate a list of ideas and priorities for comparative clinical effectiveness and patient-centered outcomes research.