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)

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.

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Publication Details

Journal
Orphanet Journal of Rare Diseases
Published
2025-05-15
DOI
https://doi.org/10.1186/s13023-025-03674-8
Citations
2
Primary Topic
Otitis Media and Relapsing Polychondritis
Type
article
Field-Weighted Citation Impact
3.34

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article

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)

Lisa Matthews, Paolo Semeraro, Cédric Sztejkowski, Marta Mosca et al.
2 citations
Orphanet Journal of Rare Diseases
Otitis Media and Relapsing Polychondritis
3.34
article

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)

Lisa Matthews, Paolo Semeraro, Cédric Sztejkowski, Marta Mosca, Carlos Vasconcelos, Cristina Pamfil, Thomas Thibault, Christina Düsing, Francesca Crisafulli, Simona Rednic, Alejandro Lamas, Laura Damian, Thomas Rose, Lou Kawka, Raquel Faria, Giuseppe Turchetti, Laurent Arnaud, Camelia Bucșa, Rosaria Talarico, Giulia Fontana, H. Devilliers, Oliver Sander, Philippe Mertz, Teodora Neagu, Mihaela Resteu, Sofia Silva-Ribeiro
article en
2 citations

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.

Orphanet Journal of Rare DiseasesVol. 20(1)
University of Pisa (IT), Scuola Superiore Sant'Anna (IT), Iuliu Hațieganu University of Medicine and Pharmacy (RO), Düsseldorf University Hospital (DE), Assistance Publique – Hôpitaux de Paris (FR), Centre de Référence des Maladies Autoinflammatoires et des Amyloses (FR), Health Awareness (United States) (US), Hospital de Santo António (PT), Maison des Sciences sociales et des Humanités de Dijon (FR), Hôpitaux Universitaires de Strasbourg (FR), Center for Rheumatology (US), Azienda Ospedaliera Universitaria Pisana (IT), Heinrich Heine University Düsseldorf (DE), Charité - Universitätsmedizin Berlin (DE), University of Brescia (IT)
European Commission
Peace, Justice and strong institutions
Openalex Percentile: Top 9%
Otitis Media and Relapsing Polychondritis
3.34
DOIOpen Access PDFOpenAlex
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