A registry is a collection of information about people, usually focused around a specific diagnosis or condition. For congenital CMV, two clinician-run registries exist that are focused around pregnant women who acquire CMV during pregnancy and children who are born symptomatic with congenital CMV. Sponsored by Virginia Commonwealth University and Baylor College of Medicine, these two registries allow for researchers to observe the incidence of CMV infection while collecting valuable evidence and data about congenital CMV outcomes during pregnancy, childhood, and beyond. Women and families are invited to learn more and participate in these registries on a voluntary basis by reaching out to them online or via email.
National CMV Registry for Pregnant Women
The purpose of the National Cytomegalovirus Registry for Pregnant Women is to develop a database of nearly all pregnant women in the U.S. who develop a congenital infection during pregnancy. This database will establish the true frequency of this infection nationally, determine the interventions used, monitor the outcomes of live born infants with a congenital CMV infection and provide a specimen repository for investigators. Patient management consultation will be available, if requested by obstetricians. In addition to maternal pregnancy history, the registry maintains medical information for each newborn including therapy, and neurologic and hearing evaluations at birth and at two years of age. This registry is no longer accepting newly pregnant women.
National Congenital CMV Disease Registry is a research program working to learn more about children born with symptoms of congenital CMV disease. Babies who succomb to the effects of congenital CMV infection in utero, and are stillborn, are now included. This national surveillance program tracks trends over time, identifies risk groups, and lays groundwork for evaluation of future intervention programs. Aside from research, the National Congenital CMV Disease Registry provides an outreach program consisting of a website, written educational material, and an annual newsletter, CMV Updates, for the purpose of educating health care professionals, families, and all others interested in learning more about congenital CMV disease.
Interested in connecting with others in your region or state? The National CMV Foundation maintains a database of parents and caregivers of CMV kiddos to better connect local groups for advocacy efforts and ongoing community support. For privacy reasons, this is not a public database and the information can only be accessed by the National CMV Foundation.