Standards for epidemiologic studies and surveillance of epilepsy

TLDR

Worldwide, an estimated 65 million people have epilepsy, and epidemiologic studies are essential to quantify its public‑health burden, guide prevention, early detection, treatment, education, and support programs, yet inconsistent definitions and methods hinder comparison across populations. This document aims to standardize definitions and methods for epilepsy epidemiology to improve population‑based studies, enable cross‑population comparisons, and support public‑health data collection. The authors outline conceptual and operational definitions of epilepsy, recommend data resources and elements, and describe suitable methods and analyses for epidemiologic studies or surveillance, while accounting for resource availability and study purpose differences.

Abstract

Summary Worldwide, about 65 million people are estimated to have epilepsy. Epidemiologic studies are necessary to define the full public health burden of epilepsy; to set public health and health care priorities; to provide information needed for prevention, early detection, and treatment; to identify education and service needs; and to promote effective health care and support programs for people with epilepsy. However, different definitions and epidemiologic methods complicate the tasks of these studies and their interpretations and comparisons. The purpose of this document is to promote consistency in definitions and methods in an effort to enhance future population‐based epidemiologic studies, facilitate comparison between populations, and encourage the collection of data useful for the promotion of public health. We discuss: (1) conceptual and operational definitions of epilepsy, (2) data resources and recommended data elements, and (3) methods and analyses appropriate for epidemiologic studies or the surveillance of epilepsy. Variations in these are considered, taking into account differing resource availability and needs among countries and differing purposes among studies.