Comparative study of epilepsy registry system in America, England, Australia, and Iran

Abstract

BACKGROUND: Disease registries are one of the important steps in the development of health information systems. The aim of this study was to compare epilepsy registration systems in the United States, England, and Australia and propose a National Epilepsy Registry System for Iran. MATERIALS AND METHODS: This study was a descriptive–comparative study conducted between 2020 and 2023, which involved the following steps: identification and selected countries with advanced registry systems in the world and Identification of their characteristics and comparison with each other. The research population included the epilepsy registration registry in Australia, England, the United States, and Iran. In this study, data were collected from forms, observations, and documents. RESULTS: In Australia, all databases, reports, and minimum datasets are electronically sent to the Australian Epilepsy Register. In England, the Epilepsy Society is responsible for collecting information. In the United States, all individuals with epilepsy voluntarily send their information to registry centers and the Epilepsy Society to help with their treatment. However, there is no national epilepsy registry system in Iran. Therefore, recommendations have been made to establish. CONCLUSION: Registration systems can help collect and analyze data related to all patients with a particular disease. When this registration is established at the national level, it becomes a valuable clinical tool for improving the quality of care and can be a significant step toward managing care for epilepsy patients and healthcare centers. Indeed, such a system can also help in preventing the onset of epilepsy and planning for the improvement of the quality of life for patients.

Keywords

• epilepsy
• information systems
• registration