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

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)

Laurent Arnaud  1 , Oliver Sander  2 , Simona Rednic  3 , Philippe Mertz  4   5 , Raquel Faria  6 , Francesca Crisafulli  7 , Sofia Silva-Ribeiro  8 , Lou Kawka  4 , Cedric Sztejkowski  4 , Christina Düsing  2 , Thomas Rose  9 , Antonio Lamas  6 , Carlos Vasconcelos  6 , Giulia Fontana  7 , Paolo Semeraro  7 , Teodora Neagu  3 , Mihaela Resteu  3 , Laura Damian  3 , Cristina Pamfil  3 , Camelia Bucsa  10 , Lisa J Matthews  11 , Rosaria Talarico  12 , Marta Mosca  12 , Giuseppe Turchetti  13 , Thomas Thibault  14 , Hervé Devilliers  14
Affiliations

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)

Laurent Arnaud et al. Orphanet J Rare Dis. .

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.

Keywords: Cross-cultural adaptation; Orphan diseases; Rare diseases; Reference networks; Rheumatology.

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Conflict of interest statement

Declarations. Ethics approval and consent to participate: The study was approved by comité d'éthique des Facultés de Médecine, d'Odontologie, de Pharmacie, des Ecoles d’Infirmières, de Kinésithérapie, de Maïeutique et des Hôpitaux de Strasbourg (CE-2024-15). All participants consented to participation. Consent for publication: All authors consent to publication. Competing interests: The authors report no disclosure related to this manuscript.

Figures

Fig. 1
Fig. 1
Overview of the classical cross-cultural adaption process for 2 languages
Fig. 2
Fig. 2
Overview of the ReCONNET-CROSSADAPT methodology for the cross-cultural adaptation of instruments for research and care in the context of rare connective tissue diseases
See this image and copyright information in PMC

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