Epilepsy self-management (ESM) is the summative set of behaviors that people with epilepsy use to cope with seizures and optimize health. This report describes the implementation and evolution of the Managing Epilepsy Well Network Database (MEW DB), an integrated data resource intended to advance knowledge on ESM. The MEW DB utilizes a three-tiered (Tier 1-3) system of data organization, with tiers of data generally increasing in ascending complexity or collection burden. A MEW DB Steering Committee (SC) establishes consensus on planned analyses using a standardized new analysis request template. The data management structure facilitates harmonization and integration of additional data, or to update the database as new data become available. The current MEW DB comprises 1,563 people with epilepsy. Mean age was 39.9 years, 64.9% women (N = 1006), 12.8% African American (N = 170), 22.2% Hispanic (N = 306). On average, individuals have lived with epilepsy since their early 20s and are prescribed between 1 and 2 antiepileptic drugs. The MEW DB spans multiple socio-ecological levels to provide a robust multi-tiered framework for studying ESM. A total of 41 common data elements have been identified through iterative consensus. This integrated database takes advantage of an extensive collective background of archival evidence in ESM and brings together engaged investigators to build a dataset that represents diverse types of individuals with epilepsy, targets health domains important to ESM, and facilitates analyses that would not be possible with sites operating independently. Overall, the MEW DB serves the greater mission of this research collaborative and has potential to advance ESM research.

中文翻译：

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管理癫痫井 (MEW) 网络数据库：在完善和实施为美国国家研究合作组织服务的集成数据工具方面的经验教训

癫痫自我管理 (ESM) 是癫痫患者用来应对癫痫发作和优化健康的一组总结性行为。本报告描述了管理癫痫井网络数据库 (MEW DB) 的实施和演变，这是一个旨在推进 ESM 知识的综合数据资源。MEW DB 使用三层（1-3 层）数据组织系统，数据层通常会随着复杂性或收集负担的增加而增加。MEW DB 指导委员会 (SC) 使用标准化的新分析请求模板就计划分析达成共识。数据管理结构有利于其他数据的协调和集成，或在新数据可用时更新数据库。目前的 MEW DB 包括 1,563 名癫痫患者。平均年龄为 39.9 岁，64.9% 为女性（N = 1006），12.8% 非裔美国人（N = 170），22.2% 西班牙裔（N = 306）。平均而言，个人从 20 多岁起就患有癫痫症，并且开具 1 到 2 种抗癫痫药物。MEW DB 跨越多个社会生态层面，为研究 ESM 提供了一个强大的多层框架。通过迭代共识，共确定了 41 个通用数据元素。这个综合数据库利用了 ESM 档案证据的广泛集体背景，并汇集了参与的调查人员来构建一个数据集，该数据集代表不同类型的癫痫患者，针对对 ESM 重要的健康领域，并促进了站点无法进行的分析独立运作。全面的，