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).

Fiche publication

Date publication

mai 2025

Journal

Orphanet journal of rare diseases

Auteurs

Membres identifiés du Cancéropôle Est :
Dr DEVILLIERS Hervé

Tous les auteurs :
Arnaud L, Sander O, Rednic S, Mertz P, Faria R, Crisafulli F, Silva-Ribeiro S, Kawka L, Sztejkowski C, Düsing C, Rose T, Lamas A, Vasconcelos C, Fontana G, Semeraro P, Neagu T, Resteu M, Damian L, Pamfil C, Bucsa C, Matthews LJ, Talarico R, Mosca M, Turchetti G, Thibault T, Devilliers H

Lien Pubmed

https://www.ncbi.nlm.nih.gov/pubmed/40375068

Résumé

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.