Effective coding in birth defects surveillance

Effective coding is critical to data collected by birth defects surveillanc e programs because subsequent use of the data depends on storage and retrie val of cases using codes. Hence, careful consideration needs to be given to the coding process. The primary goal of coding is to accurately, completel y, and concisely represent infants with birth defects. Coding procedures ne ed to accommodate the objectives of the surveillance program; for example, programs that focus on research may require different coding procedures fro m those that focus on linking infants to services. Several challenges exist in coding birth defects, including the need to distinguish infants with mu ltiple defects and syndromes from those with isolated defects, and the need for strategies to code suspected defects for which confirmation is not ava ilable. Selection of a coding system by a birth defects surveillance progra m is central to the utility of the data collected. Most programs use a modi fication of the International Statistical Classification of Diseases and Re lated Health Problems-based (ICD) systems. This paper addresses ICD-based s ystems and the modifications used by many birth defects surveillance progra ms and presents examples of the problems in interpreting birth defects data because of inappropriate coding. Teratology 64:S3-S7, 2001. Published 2001 Wiley-Liss, Inc.(dagger)