• 文献检索
  • 文档翻译
  • 深度研究
  • 学术资讯
  • Suppr Zotero 插件Zotero 插件
  • 邀请有礼
  • 套餐&价格
  • 历史记录
应用&插件
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
定价
高级版会员购买积分包购买API积分包
服务
文献检索文档翻译深度研究API 文档MCP 服务
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利:CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2026

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验

欧洲参考网络(ERN)ReCONNET针对罕见结缔组织病背景下研究与护理工具进行跨文化调适的方法(CROSSADAPT)

European Reference Network (ERN) ReCONNET methodology for the cross-cultural adaptation of instruments for research and care in the context of rare connective tissue diseases (CROSSADAPT).

作者信息

Arnaud Laurent, Sander Oliver, Rednic Simona, Mertz Philippe, Faria Raquel, Crisafulli Francesca, Silva-Ribeiro Sofia, Kawka Lou, Sztejkowski Cedric, Düsing Christina, Rose Thomas, Lamas Antonio, Vasconcelos Carlos, Fontana Giulia, Semeraro Paolo, Neagu Teodora, Resteu Mihaela, Damian Laura, Pamfil Cristina, Bucsa Camelia, Matthews Lisa J, Talarico Rosaria, Mosca Marta, Turchetti Giuseppe, Thibault Thomas, Devilliers Hervé

机构信息

Department of Rheumatology, National Reference Center for Rare Autoimmune Diseases (RESO), Hôpitaux Universitaires de Strasbourg, Strasbourg, France.

Department for Rheumatology and Hiller Research Centre for Rheumatology, University Hospital, Düsseldorf, Germany.

出版信息

Orphanet J Rare Dis. 2025 May 15;20(1):230. doi: 10.1186/s13023-025-03674-8.

DOI:10.1186/s13023-025-03674-8
PMID:
40375068
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12080175/
Abstract

The traditional process of intercultural adaptation, while suitable for one or a few target languages, is not optimal for developing instruments for rare connective tissue diseases (CTDs) in multiple languages simultaneously. The European Reference Network ReCONNET presents the protocol for a novel methodology for cross-cultural adaptation of instruments for research and care in the context of rare CTDs (ReCONNET-CROSSADAPT). It is initiated by the identification of 'key-terms' that are crucial for maintaining the original meaning of the source document. Each language group, led by a senior member and two collaborators, independently assesses the existence and equivalence of these key terms in target languages. Reconciliation meetings are held to establish agreed-upon terms for consistent usage across translations when difficulties arise with key-terms. Subsequently, each language group translates the source document, followed by a reconciliation meeting involving one CTD patient in each group. The purpose of this meeting is to address potential discrepancies among translations, ensuring a comprehensive assessment from a linguistic, cultural and patient perspective. Collective feedback and consensus-based decision-making guide the resolution process. This methodology eliminates the need for backward translation, optimizing time and cost utilization. This new ReCONNET-CROSSADAPT methodology ensures linguistic accuracy, cultural relevance, and contextual appropriateness for the cross-cultural adaptation of instruments for research and care in the context of rare CTDs.

摘要

传统的跨文化适应过程虽然适用于一种或几种目标语言,但对于同时开发多种语言的罕见结缔组织病(CTD)研究工具而言并非最佳选择。欧洲罕见病参考网络ReCONNET提出了一种新方法的方案,用于在罕见CTD背景下对研究和护理工具进行跨文化适应(ReCONNET-CROSSADAPT)。该方案首先要确定对保持源文件原意至关重要的“关键术语”。每个语言小组由一名资深成员和两名合作者带领,独立评估这些关键术语在目标语言中的存在情况和等效性。当关键术语出现困难时,会召开协调会议,以确定在所有翻译中一致使用的商定术语。随后,每个语言小组翻译源文件,之后召开一次协调会议,每个小组有一名CTD患者参与。本次会议的目的是解决翻译之间可能存在的差异,确保从语言、文化和患者角度进行全面评估。集体反馈和基于共识的决策指导解决过程。这种方法无需进行回译,优化了时间和成本的利用。这种新的ReCONNET-CROSSADAPT方法确保了在罕见CTD背景下对研究和护理工具进行跨文化适应时的语言准确性、文化相关性和语境适当性。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/63b8/12080175/587635cf0e74/13023_2025_3674_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/63b8/12080175/d08e6b639a80/13023_2025_3674_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/63b8/12080175/587635cf0e74/13023_2025_3674_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/63b8/12080175/d08e6b639a80/13023_2025_3674_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/63b8/12080175/587635cf0e74/13023_2025_3674_Fig2_HTML.jpg

相似文献

1
European Reference Network (ERN) ReCONNET methodology for the cross-cultural adaptation of instruments for research and care in the context of rare connective tissue diseases (CROSSADAPT).欧洲参考网络(ERN)ReCONNET针对罕见结缔组织病背景下研究与护理工具进行跨文化调适的方法(CROSSADAPT)
Orphanet J Rare Dis. 2025 May 15;20(1):230. doi: 10.1186/s13023-025-03674-8.
2
Challenges in the transition of care for rare connective tissue diseases: results from the 2023 ERN ReCONNET Transition of Care Task Force survey.罕见结缔组织病护理转诊中的挑战:2023年ERN ReCONNET护理转诊特别工作组调查结果
Rheumatol Adv Pract. 2025 Jan 11;9(1):rkae149. doi: 10.1093/rap/rkae149. eCollection 2025.
3
Clinical practice guidelines adherence, knowledge and awareness in rare and complex connective tissue diseases across Europe: results from the first ERN ReCONNET survey.欧洲罕见和复杂结缔组织疾病的临床实践指南依从性、知识和意识:来自第一份 ERN ReCONNET 调查的结果。
RMD Open. 2020 Aug;6(2):0. doi: 10.1136/rmdopen-2020-001344.
4
Cross-cultural adaptation of the connective tissue disease screening questionnaire and development of a Chinese version in a multi-ethnic Asian population.结缔组织病筛查问卷的跨文化调适及在多民族亚洲人群中开发中文版。
Clin Rheumatol. 2019 Sep;38(9):2383-2397. doi: 10.1007/s10067-019-04567-5. Epub 2019 Apr 29.
5
The added value of a European Reference Network on rare and complex connective tissue and musculoskeletal diseases: insights after the first 5 years of the ERN ReCONNET.欧洲罕见复杂结缔组织和肌肉骨骼疾病参考网络的附加值:ERN ReCONNET 成立后的前 5 年得到的启示。
Clin Exp Rheumatol. 2022 May;40 Suppl 134(5):3-11. doi: 10.55563/clinexprheumatol/d2qz38. Epub 2022 Mar 29.
6
ERN ReCONNET points to consider for treating patients living with autoimmune rheumatic diseases with antiviral therapies and anti-SARS-CoV-2 antibody products.欧洲抗风湿病联盟(ERN)ReCONNET关于使用抗病毒疗法和抗SARS-CoV-2抗体产品治疗自身免疫性风湿病患者的考虑要点。
Clin Exp Rheumatol. 2023 Mar;41(3):543-553. doi: 10.55563/clinexprheumatol/jpargp. Epub 2023 Mar 14.
7
The significance of exploring conceptual equivalence within the process of the cross-cultural adaptation of tools: The case of the Patient's Perception of Feeling Known by their Nurses Scale.探索工具跨文化适应过程中概念对等性的意义:以患者对护士了解感量表为例。
J Nurs Scholarsh. 2023 Nov;55(6):1268-1279. doi: 10.1111/jnu.12910. Epub 2023 May 22.
8
RarERN Path: a methodology towards the optimisation of patients' care pathways in rare and complex diseases developed within the European Reference Networks.罕见病和复杂疾病欧洲参考网络优化患者护理路径的方法:RarERN路径
Orphanet J Rare Dis. 2020 Dec 14;15(1):347. doi: 10.1186/s13023-020-01631-1.
9
The impact of COVID-19 on rare and complex connective tissue diseases: the experience of ERN ReCONNET.COVID-19 对罕见和复杂结缔组织病的影响:ERN ReCONNET 的经验。
Nat Rev Rheumatol. 2021 Mar;17(3):177-184. doi: 10.1038/s41584-020-00565-z. Epub 2021 Jan 6.
10
Translation and cultural adaptation of the Aguado Syntax Test (AST) into Brazilian Portuguese.将阿瓜多句法测试(AST)翻译成巴西葡萄牙语并进行文化调适。
Codas. 2017 Dec 7;29(6):e20170052. doi: 10.1590/2317-1782/20172017052.

本文引用的文献

1
The added value of a European Reference Network on rare and complex connective tissue and musculoskeletal diseases: insights after the first 5 years of the ERN ReCONNET.欧洲罕见复杂结缔组织和肌肉骨骼疾病参考网络的附加值:ERN ReCONNET 成立后的前 5 年得到的启示。
Clin Exp Rheumatol. 2022 May;40 Suppl 134(5):3-11. doi: 10.55563/clinexprheumatol/d2qz38. Epub 2022 Mar 29.
2
Relapsing polychondritis: state of the art on clinical practice guidelines.复发性多软骨炎:临床实践指南的最新进展
RMD Open. 2018 Oct 18;4(Suppl 1):e000788. doi: 10.1136/rmdopen-2018-000788. eCollection 2018.
3
A review of guidelines for cross-cultural adaptation of questionnaires could not bring out a consensus.
对问卷跨文化调适指南的回顾未能达成共识。
J Clin Epidemiol. 2015 Apr;68(4):435-41. doi: 10.1016/j.jclinepi.2014.11.021. Epub 2014 Dec 17.
4
Cross-cultural adaptation of the Health Education Impact Questionnaire: experimental study showed expert committee, not back-translation, added value.《健康教育培训效果问卷》跨文化调适:专家委员会而不是回译,更具附加价值:实验研究
J Clin Epidemiol. 2015 Apr;68(4):360-9. doi: 10.1016/j.jclinepi.2013.07.013. Epub 2013 Sep 29.
5
The process of reconciliation: evaluation of guidelines for translating quality-of-life questionnaires.调和过程:质量生活问卷翻译准则评估。
Expert Rev Pharmacoecon Outcomes Res. 2012 Apr;12(2):189-97. doi: 10.1586/erp.11.102.
6
The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes.COSMIN 研究就健康相关患者报告结局的测量属性的分类学、术语和定义达成了国际共识。
J Clin Epidemiol. 2010 Jul;63(7):737-45. doi: 10.1016/j.jclinepi.2010.02.006.
7
Literature review of methods to translate health-related quality of life questionnaires for use in multinational clinical trials.用于跨国临床试验的与健康相关的生活质量问卷翻译方法的文献综述。
Value Health. 2008 May-Jun;11(3):509-21. doi: 10.1111/j.1524-4733.2007.00292.x. Epub 2007 Dec 18.
8
Translation, adaptation, and validation of the SF-36 Health Survey for use in Japan.用于日本的SF-36健康调查的翻译、改编及验证。
J Clin Epidemiol. 1998 Nov;51(11):1037-44. doi: 10.1016/s0895-4356(98)00095-x.
9
Cross-cultural adaptation and validation of health status measures.健康状况测量指标的跨文化调适与验证
Scand J Rheumatol. 1995;24(2):61-3. doi: 10.3109/03009749509099285.