Arthrogryposis multiplex congenita (AMC) has been described and defined in thousands of articles, but the terminology used has been inconsistent. Some have described it as a diagnosis or syndrome, others as a term or clinical finding. This lack of common language can lead to confusion in clinical and research communities. The aim of this study was to develop a consensus-based definition for AMC using international expert opinion. A consensus-based definition will help harmonize research and clinical endeavors and will facilitate communication among families, clinicians, and researchers. This article describes the methodology used leading to a proposed definition of AMC. First, a literature review was conducted to identify AMC definitions used in included studies. The most commonly used words in the definitions were extracted. Second, a group of eight experts in AMC was selected to identify elements considered critically important to the definition of AMC. Third, based on these critical elements and the literature review, a definition was drafted by the research team. Fourth, a modified Delphi consensus process was conducted using electronic surveys with 25 experts in the field of AMC from eight countries. Survey results were analyzed quantitatively and qualitatively and drafts were modified accordingly. Three rounds of surveys were completed until consensus was reached on a definition of AMC. An annotation of this definition, developed by a panel of international experts, is provided in a separate manuscript in this special issue.

中文翻译：

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多发性关节炎的先天性定义：使用基于国际共识的方法进行更新。

数以千计的文章已经描述和定义了多发性关节炎的先天性关节炎（AMC），但是所使用的术语并不一致。有些人将其描述为诊断或综合症，另一些人将其描述为术语或临床发现。通用语言的缺乏会导致临床和研究界的困惑。这项研究的目的是使用国际专家意见为AMC制定基于共识的定义。基于共识的定义将有助于协调研究和临床工作，并促进家庭，临床医生和研究人员之间的沟通。本文介绍了导致提出AMC定义的方法。首先，进行了文献综述，以确定纳入研究中使用的AMC定义。提取定义中最常用的单词。第二，选择了由AMC的八位专家组成的小组，以识别对AMC的定义至关重要的要素。第三，基于这些关键要素和文献综述，研究团队起了一个定义。第四，使用来自8个国家的25名AMC领域的25名专家的电子调查，对德尔福共识进行了修改。对调查结果进行了定量和定性分析，并对草案进行了相应的修改。完成了三轮调查，直到就AMC的定义达成共识为止。由国际专家小组开发的此定义的注释在此特刊的单独手稿中提供。基于这些关键要素和文献综述，研究团队起了一个定义。第四，使用来自8个国家的25名AMC领域的25名专家的电子调查，对德尔福共识进行了修改。对调查结果进行了定量和定性分析，并对草案进行了相应的修改。完成了三轮调查，直到就AMC的定义达成共识为止。由国际专家小组开发的此定义的注释在此特刊的单独手稿中提供。基于这些关键要素和文献综述，研究团队起了一个定义。第四，使用来自8个国家的25名AMC领域的25名专家的电子调查，对Delphi共识流程进行了修改。对调查结果进行了定量和定性分析，并对草案进行了相应的修改。完成了三轮调查，直到就AMC的定义达成共识为止。由国际专家组成的小组对此定义进行了注释，并在此特刊的另一份手稿中提供了该注释。对调查结果进行了定性和定量分析，并对草案进行了相应的修改。完成了三轮调查，直到就AMC的定义达成共识为止。由国际专家小组开发的此定义的注释在此特刊的单独手稿中提供。对调查结果进行了定量和定性分析，并对草案进行了相应的修改。完成了三轮调查，直到就AMC的定义达成共识为止。由国际专家小组开发的此定义的注释在此特刊的单独手稿中提供。