Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 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.

PubMed Disclaimer

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

References

    1. Talarico R, Aguilera S, Alexander T, Amoura Z, Andersen J, Arnaud L, et al. 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. Clin Exp Rheumatol. 2022;40(5 suppl. 134):3–11. - DOI - PubMed
    1. Rednic S, Damian L, Talarico R, Scirè CA, Tobias A, Costedoat-Chalumeau N, et al. Relapsing polychondritis: state of the art on clinical practice guidelines. RMD Open. 2018;4(Suppl 1): e000788. - DOI - PMC - PubMed
    1. Mokkink LB, Terwee CB, Patrick DL, Alonso J, Stratford PW, Knol DL, et al. The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. J Clin Epidemiol. 2010;63(7):737–45. - DOI - PubMed
    1. Epstein J, Santo RM, Guillemin F. A review of guidelines for cross-cultural adaptation of questionnaires could not bring out a consensus. J Clin Epidemiol. 2015;68(4):435–41. - DOI - PubMed
    1. European Regulatory Issues and Quality of Life Assessment (ERIQA) Group, Acquadro C, Conway K, Hareendran A, Aaronson N. Literature review of methods to translate health-related quality of life questionnaires for use in multinational clinical trials. Value Health. 2008;11(3):509–21. - DOI - PubMed

LinkOut - more resources