Evidence map›Paper›PMID 40375068›Full record

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).

Laurent Arnaud, Oliver Sander, Simona Rednic, Philippe Mertz, Raquel Faria, Francesca Crisafulli, Sofia Silva-Ribeiro, Lou Kawka, Cedric Sztejkowski, Christina Düsing and 16 more

Abstract read
In one paragraph

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.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. Review
  5. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

26 authors.

Laurent ArnaudDepartment of Rheumatology, National Reference Center for Rare Autoimmune Diseases (RESO), Hôpitaux Universitaires de Strasbourg, Strasbourg, France. Laurent.arnaud@chru-strasbourg.fr.ORCID 0000-0002-8077-8394
Oliver SanderDepartment for Rheumatology and Hiller Research Centre for Rheumatology, University Hospital, Düsseldorf, Germany.
Simona RednicDepartment of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania.
Philippe MertzDepartment of Rheumatology, National Reference Center for Rare Autoimmune Diseases (RESO), Hôpitaux Universitaires de Strasbourg, Strasbourg, France.
Raquel FariaUnidade de Imunologia Clínica, Hospital de Santo António, Unidade Local de Saúde Santo António, Porto, Portugal.
Francesca CrisafulliRheumatology and Clinical Immunology Unit, ASST Spedali Civili of Brescia, Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.
Sofia Silva-Ribeiro, Porto, Portugal.
Lou KawkaDepartment of Rheumatology, National Reference Center for Rare Autoimmune Diseases (RESO), Hôpitaux Universitaires de Strasbourg, Strasbourg, France.
Cedric SztejkowskiDepartment of Rheumatology, National Reference Center for Rare Autoimmune Diseases (RESO), Hôpitaux Universitaires de Strasbourg, Strasbourg, France.
Christina DüsingDepartment for Rheumatology and Hiller Research Centre for Rheumatology, University Hospital, Düsseldorf, Germany.
Thomas RoseKlinik Für Rheumatologie Und Klinische Immunologie, Charité Universitätsmedizin Berlin, Charité Platz 1, 10117, Berlin, Germany.
Antonio LamasUnidade de Imunologia Clínica, Hospital de Santo António, Unidade Local de Saúde Santo António, Porto, Portugal.
Carlos VasconcelosUnidade de Imunologia Clínica, Hospital de Santo António, Unidade Local de Saúde Santo António, Porto, Portugal.
Giulia FontanaRheumatology and Clinical Immunology Unit, ASST Spedali Civili of Brescia, Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.
Paolo SemeraroRheumatology and Clinical Immunology Unit, ASST Spedali Civili of Brescia, Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.
Teodora NeaguDepartment of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania.
Mihaela ResteuDepartment of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania.
Laura DamianDepartment of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania.
Cristina PamfilDepartment of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania.
Camelia BucsaASPOR Association of Romanian Relapsing Polychondritis Patients &, Iuliu Hațieganu University of Medicine and Pharmacy, Cluj-Napoca, Romania.
Lisa J MatthewsRelapsing Polychondritis Awareness & Support, (Relapsingpolychondritis.Org), Worcester, UK.
Rosaria TalaricoRheumatology Unit, Azienda Ospedaliero Universitaria Pisana, University of Pisa, Pisa, Italy.
Marta MoscaRheumatology Unit, Azienda Ospedaliero Universitaria Pisana, University of Pisa, Pisa, Italy.
Giuseppe TurchettiInstitute of Management, Scuola Superiore Sant'Anna, 56127, Pisa, Italy.
Thomas ThibaultInternal Medicine and Systemic Diseases Unit, University Hospital Centre Dijon, Dijon, France.
Hervé DevilliersInternal Medicine and Systemic Diseases Unit, University Hospital Centre Dijon, Dijon, France.

Funding

European Commission ERN ReCONNET
6 · The paper itself

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.

Indexed as

Connective Tissue DiseasesRare DiseasesCross-Cultural ComparisonEuropeHumansLanguageCross-cultural adaptationOrphan diseasesRare diseasesReference networksRheumatology

Identifiers

PMID40375068
PMCPMC12080175

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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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.