Establishment of common data element for myasthenia gravis and its significance in the researches of phenotypes

doi:10.3969/j.issn.1672-6731.2020.01.007

Abstract

Abstract:

Common data element (CDE) is standardized data elements that describe the characteristics of diseases, with the aim of promoting the structure and standardization of data, reducing the missing of important data and narrowing the differences between different researchers in the process of data acquisition. The diversity and heterogeneity of disease phenotypes require rational preparation of CDE to reflect the disease phenotypes from multiple dimensions. This paper introduces the special problems in the establishment of CDE of myasthenia gravis (MG) and discusses the related issues on the process of developing CDE, reviews the CDE of MG domestic and abroad, and discusses the significance of CDE in the researches of MG phenotypes.

Key words: Myasthenia gravis, Common data element (not in MeSH), Phenotype, Review

摘要：

共同数据元是描述疾病特征的标准化数据元素，旨在促进数据的结构化和标准化，以减少对重要数据的遗漏及缩小数据获取过程中不同收集者之间的差异。疾病表型的多样性和异质性需在研究中合理编制共同数据元以从多维度反映疾病表型。本文介绍并讨论重症肌无力共同数据元编制中的特殊问题和相关事项，回顾国内外重症肌无力共同数据元的编制，探讨共同数据元在重症肌无力表型研究中的意义。

关键词: 重症肌无力, 共同数据元（非MeSH词）, 表型, 综述

LI Hai-feng, HUANG Yu, CHEN Xiang-jun. Establishment of common data element for myasthenia gravis and its significance in the researches of phenotypes[J]. Chinese Journal of Contemporary Neurology and Neurosurgery, 2020, 20(1): 34-47.

李海峰, 黄雨, 陈向军. 重症肌无力共同数据元编制及其在表型研究中的意义[J]. 中国现代神经疾病杂志, 2020, 20(1): 34-47.

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