Background of Congenital Malformations Registry

The Congenital Malformations Registry (CMR) of the New York State Department of Health is a repository for case reports on children who are born or reside in New York State and are diagnosed before the age of two years with any structural, functional or biochemical abnormality determined genetically or induced during gestation and not due to birthing events.

The concept of the CMR arose out of the recognition of the environment as a potential etiologic factor in the occurrence of birth anomalies. The establishment of the Registry permits the monitoring of trends in congenital malformation rates and the conduct of etiologic studies.

The CMR was established as part of the Environmental Disease Surveillance Program in 1982, by enactment of Part 22 of the New York State Sanitary Code. Part 22 stipulates that every physician and hospital in attendance on an individual diagnosed within two years of birth as having one or more congenital anomalies shall file a supplementary report with the State Commissioner of Health within ten days of diagnosis.

By law, data collected by the CMR can be used only for surveillance and to facilitate epidemiologic research into the prevention of environmental diseases, as prescribed by Public Health Law 206(1J). Confidentiality of all data reported to the Registry is strictly maintained by Department of Health staff and rigorously safeguarded by Section 206(1J), which specifically prohibits the release of personal identifiers. Families of cases are never contacted without prior consent of the Department of Health's Institutional Review Board and notification of the patient's physician. If a child is adopted, the birth mother will never be contacted.

Registry operating procedures are continually being improved by researchers encompassing a variety of scientific disciplines (epidemiology, statistics, medicine, demography and computer science).