Introduction: Birth defects surveillance in the United States

Abstract

State programs for the surveillance of birth defects now provide data on the vast majority of the nation’s births. The number of state programs has increased dramatically in the late 1990s with the passage of the Birth Defects Prevention Act of 1998 and the subsequent funding of 26 cooperative agreements between states and the Centers for Disease Control and Prevention (CDC). As of the end of 2000, 45 (87%) of the states, DC, and Puerto Rico, have existing programs for monitoring birth defects (Larry Edmonds, personal communication). The purposes for conducting surveillance for birth defects have not changed in the past two decades. States have increasingly diversified in the extent to which they address these purposes, which may conveniently be grouped into three categories: 1) epidemiological, 2) preventative/planning, and 3) social/ educational, as suggested by Reed and Meaney (‘88). The articles appearing in this issue of Teratology encompass the full breadth of purposes for doing surveillance. This introduction will attempt to summarize the papers using the aforementioned categories, with one slight deviation, in that the second and third categories are combined. Only two of the articles fell into the grouping of two categories and the issues each of these articles addresses overlap the two categories considerably. This is done for the convenience of the reader, and the categories should in no way be construed as the definitive way to view the purposes/rationale for surveillance programs. If anything, reports on the results of surveillance programs will exhibit considerable overlap and implications, potential or actual, for the categories Reed and Meaney suggested more than a decade ago. The majority of articles in this issue fit within the epidemiological category for purpose of surveillance. Rasmussen and Moore provide a useful review of coding issues and problems specifically for birth defects surveillance. The authors’ use of specific examples of the effects of inaccurate coding in studies of birth defects is particularly effective in demonstrating why this aspect of surveillance deserves our utmost attention. The paper will be a major resource for the chapter on coding in the Surveillance Guidelines and Standards Manual that is in progress through the efforts of the committee by that name of the National Birth Defects Prevention Network (NBDPN).