Identifying and tracing a population at risk: the DESAD Project experience

In recent years, medical record review has been used to alert patients who have received drugs or treatments that have newly discovered side-effects. The experience of the national cooperative Diethylstilbestrol-Adenosis (DESAD) Project in identifying and notifying women exposed in utero to diethylstilbestrol (DES) shows this to be a difficult task. In order to identify 4,830 exposed women, 221,245 charts were reviewed. Detailed tracing data for one of the centers participating in the DESAD Project indicated that only 85 per cent of the 690 DES-exposed women identified at that center could be notified of exposure. The DESAD Project experience has led to recommendations for standardized prenatal records and drug lists, long-term storage of medical records, new legal guidelines, and improved recording of follow-up information, taking into account issues of privacy.