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Orphanet journal of rare diseases · 2025

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).

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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

Аннотация

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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