EULAR recommendations for a core dataset to support clinical care and translational and observational research in systemic lupus erythematosus
Year: 2025
Type: article
Abstract: OBJECTIVES: To enhance clinical and multicentre research outcomes in systemic lupus erythematosus (SLE), standardised documentation of patient- and disease-related features is important. The aim of this European Alliance of Associations for Rheumatology (EULAR) taskforce was to define a core set of essential items for the comprehensive care of SLE patients in clinical practice, with an extension for vital elements required for translational and observational research. METHODS: A multidisciplinary EULAR task force group engaged in a multistep approach including a 4-round Delphi survey and a face-to-face meeting. RESULTS: Twenty-five stakeholders from 14 different countries participated. During the process, the initial list of 99 items was reduced to 73 items for inclusion in the clinical core dataset and 8 additional items for research extension. The items were grouped in the domains 'general', 'disease activity', 'disease history', 'disease damage', 'comorbidities', 'patient reported outcomes', 'laboratory markers', 'outcomes', and 'treatment', with suggested frequencies of assessment. CONCLUSIONS: The presented clinical core dataset and its research extension are designed to improve SLE patient care and facilitate collaborative research by ensuring the comparability of datasets and cohort descriptions. This initiative lays the foundation for the establishment of a global SLE data space and has the potential to expedite the implementation of personalised medicine in SLE care.
Source: Annals of the Rheumatic Diseases
Authors: Johanna Mucke, George Bertsias, Martin Aringer, Laurent Arnaud, Carina Boström, Ricard Cervera, Gamal Chehab, László Czirják, Lene Wohlfahrt Dreyer, Luís Inês, Søren Jacobsen, Charite Kjaerside Nielsen, Emiliano Marasco, Marta Mosca, Kirsi Myllys, Cristina Pamfil, Jose M. Pego-Reigosa, Jutta G. Richter, Savino Sciascia, Farah Tamirou, Michel Tsang-A-Sjoe, Edward M. Vital, Ronald Van Vollenhoven, Chris Wincup, Matthias Schneider
Institutions: Rheumazentrum Ruhrgebiet, Heinrich Heine University Düsseldorf, Ruhr University Bochum, University of Crete, Technische Universität Dresden, Hôpital d'Hautepierre, Karolinska Institutet, Universitat de Barcelona, Kliniken Essen-Mitte, University of Pecs, Aalborg University Hospital, Unidade Local de Saúde de Coimbra, University of Copenhagen, Rigshospitalet, Bambino Gesù Children's Hospital, University of Pisa, Iuliu Hațieganu University of Medicine and Pharmacy, University Hospital Complex Of Vigo, University of Turin, Cliniques Universitaires Saint-Luc, UCLouvain, University of Leeds, King's College Hospital
Language: English
Subfield: Rheumatology
Field: Medicine
Domain: Health Sciences
Open Access status: hybrid
Estimated APC paid: $4,870
Award: G2035664709
OpenAlex ID: W4413403246