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Patient Registries

CMV Registries

National Congenital CMV Disease Registry

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.

National CMV Family Database

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.
Register today!


The TORCH screen showed that I had been exposed to a primary infection of the Cytomegalovirus. CMV causes the most damage to babies whose mothers contract it for the first time while pregnant. I never knew that because I had a toddler in daycare, that I was at a greater risk for exposure.
— Lynn, Mother