Linking multiple data sources in fetal alcohol syndrome surveillance--Alaska.

Although fetal alcohol syndrome (FAS) is a major preventable cause of mental retardation in the United States (1), surveillance for this problem is subject to at least five constraints: difficulty in identifying the syndrome at birth (2); the subjective nature of the diagnosis; variability in the severity and type of conditions associated with FAS; age-specific variations in the expression of the phenotype; and the lack of specificity in the International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) code for FAS. Previous studies have documented high rates of FAS among American Indians and Alaskan Natives (ANs) (3,4). To better ascertain cases of FAS in Alaska and to determine the prevalence of this problem among ANs, the Alaska Department of Health and Social Services (ADHSS), the Indian Health Service (IHS), and CDC linked and analyzed data from state sources (i.e., birth and death certificates and Medicaid claims), an IHS case file, and a private pediatric practice case file. This report summarizes the findings from this analysis and presents a preliminary minimum FAS prevalence rate for ANs.