Validation of the fetal alcohol spectrum disorder (FASD) 4-Digit Diagnostic Code.

BACKGROUND The fetal alcohol spectrum disorder (FASD) 4-Digit Diagnostic Code has been used by interdisciplinary diagnostic teams worldwide for 17 years. It was created to improve the ease, accuracy, and reproducibility of diagnoses across the full spectrum of FASD. Over the years, a number of FAS/D diagnostic guidelines have been proposed. As the field of FASD moves forward, it will be important to adopt a single set of diagnostic guidelines worldwide. To achieve this, the performance (validity) of current diagnostic guidelines must be rigorously assessed and reported. OBJECTIVE To summarize the body of evidence that has amassed over 20 years that validates the performance of the FASD 4-Digit Diagnostic Code. METHODS The evidence validating the 4-Digit Code is documented across 35 studies published between 1992 and 2012, including new information presented in this report. These studies and data sources include the delineation of the FAS facial phenotype; creation of the 4-Digit Code (1997-2004); our 10-year, foster-care FAS screening program; our MRI/fMRI/MRS studies; analysis of 2,550 individuals evaluated for FASD over 20 years in the WA State FASDPN clinics, and analysis of 622 patient satisfaction/follow-up surveys; surveys of 10,000 professionals attending the University of Washington FASD diagnostic clinic trainings; and surveys of over 700 professionals worldwide who completed the 4-Digit Code Online Course. CONCLUSION The 4-Digit Code is a simple, comprehensive, evidence-based, validated diagnostic system. It has served as the cornerstone of a fully integrated FASD screening, diagnostic, intervention, prevention, and surveillance program in Washington State for the past 20 years.