Welcome to the Congenital Malformations Registry

About

The Congenital Malformations Registry (CMR) is an archive for case reports of children born or residing in New York State diagnosed before the age of two with any structural, functional or biochemical abnormality determined genetically or induced during gestation and not due to birthing events.

Hospitals and physicians throughout the state are required to report children with particular congenital malformations who have been diagnosed before the age of two. The CMR Handbook indicates how to make those reports.

Confidentiality

DOH staff rigorously secure and protect all CMR information in order to maintain and uphold a high level of privacy and confidentiality. Access to CMR information is restricted and carefully monitored so that the identity of children and families is not disclosed. The DOH's Institutional Review Board for the Protection of Human Subjects must approve any research projects for which families are contacted. If a child is adopted, neither the birth parents nor the adoptive parents are contacted. When information is provided to communities to help them plan for services, no names are attached to the information.

Please view our CMR Handbook for more detailed information.

History

The CMR was developed as a result of the Love Canal crisis. In 1978, the New York State Department of Health (DOH) investigated whether adverse pregnancy outcomes increased in the Love Canal area. Birth certificates obtained and used for a study of low birth weight births proved to be inadequate for the evaluation of birth defects. In the 1980s, cognizant of the need to collect more reliable and valid surveillance data for birth defects, the legislature enacted a bill authorizing the DOH to require hospitals and physicians to report diseases and conditions that are designated as "environmentally related".

Mission & Objectives

The mission of the CMR is to:

• collect information on the births of infants and children with selected birth defects in New York State;
• monitor trends and patterns of prevalence, mortality, and survival rates of selected birth defects; and,
• provide data for education, research, and planning in public health, leading to the understanding, prevention, and treatment of birth defects.

Specific objectives of the CMR include:

• Determine the annual incidence of congenital malformations among New York live births.
• Monitor the incidence and type of major malformations with regard to geographic distributions and community characteristics.
• Investigate suspected increases in the incidence of malformations that may be associated with environmental exposures.
• Conduct epidemiological studies of specific malformations.
• Respond to medical inquiries regarding congenital malformations.
• Work with other bureaus within the DOH to ensure that services and quality of care for children with malformations are provided.
• Provide data for planning, advocacy, education, and other requests.

Questions?

If your child was born with a birth defect, your child's doctor may have discussed with you the specific aspects of your child's medical condition. However, there may be additional services and support available to you, your child, and your family.

Visit our Resources for Families page for a list of resources that may be useful. If you have any questions, please contact your doctor or our Growing Up Healthy Hotline at 1-800-522-5006.

If you are a health care professional or researcher, visit our Resources for Health Professionals & Researchers page.