ArticleOrphanet journal of rare diseases2025
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).
Article in Orphanet journal of rare diseases, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
5 citing papers in PubMed.
- Global author collaborations in lupus research and publications: a meta-research and network analysis.Lupus science & medicine · 2026Article
- Methodology for eliciting consensus on high-level concepts in rare connective tissue and musculoskeletal diseases (ReCONNET-ELICIT).Orphanet journal of rare diseases · 2026Article
- Development and validation of a relapsing polychondritis disease-specific quality of life instrument (ERN ReCONNET RP-QoL).Rheumatology (Oxford, England) · 2026Article
- European Reference Networks - a flagship activity of the EU in the field of rare and complex diseases: from 2017 to 2025.Orphanet journal of rare diseases · 2026Review
- Gross motor functional classification for arthrogryposis multiplex congenita: protocol for co-development involving public with lived and professional experience.Research involvement and engagement · 2025Review
Corrections and comments
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Authors and funding
26 authors.
Funding
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.