Registry to Referral: A Promising Means for Identifying and Referring Infants and Toddlers for Early Intervention Services

Birth defects are the leading cause of death for infants in their first year of life and contribute substantially to childhood morbidity and long-term disability among survivors. Both the Centers for Disease Control and Prevention and the March of Dimes Birth Defects Foundation actively support birth defects monitoring programs across the United States. Currently, 33 states have some type of birth defects monitoring program and 16 more have programs in the planning stages. In general, these surveillance programs track birth defects to describe incidence and identify subpopulations for possible preventive interventions. The importance of early intervention in reducing or preventing secondary disabilities associated with a primary condition has been well documented. A birth defects registry, because of its ability to capture this information earlier than other data collection methods, is a potentially valuable source of information to use in referring families for services. In this paper, we describe the results of a survey to identify programs that are using, or are planning to use, their birth defects surveillance systems as a means of identifying and referring children and families for services. We report the level of interest and experience in developing such referral systems in state birth defect surveillance programs, provide 4 brief case examples, and recommend steps early intervention professionals can take to further discussion about using registries for making referrals.