“Flying blind” without epilepsy surveillance data

In this issue of Neurology®, Dale Hesdorffer and colleagues¹ report the risk of developing epilepsy, while accounting for the competing risk of mortality, using population-based data from Rochester, Minnesota. These authors should be commended for their sophisticated analysis, which is an important contribution to the epilepsy epidemiology research literature. But a careful look at their data reveals that their analysis is of people whose epilepsy was diagnosed 31–50 years ago. Timely, good-quality population-based data that met their research needs were not available. The authors did the best analysis possible with the data available, but these data from a long-past era of epilepsy classification, diagnosis, and care may not reflect the current reality of neurology practice. This minor imperfection of their epidemiologic analysis is a manifestation of a much greater problem with far more important consequences— the almost absent epilepsy surveillance infrastructure in the United States.

Watch the evening news, listen to the radio, or search online for health information, and you will find news coverage of the latest surveillance report, often from the Centers for Disease Control and Prevention (CDC). Increasing drug-resistant tuberculosis is a serious threat, breast cancer among African American women is often diagnosed too …