EULAR recommendations for a core dataset to support clinical care and translational and observational research in systemic lupus erythematosus

Publikation: Beitrag in Fachzeitschrift › Forschungsartikel › Beigetragen › Begutachtung

Beitragende

  • Johanna Mucke - , Heinrich Heine Universität Düsseldorf, Ruhr-Universität Bochum (Autor:in)
  • George Bertsias - , Universität Kreta (Autor:in)
  • Martin Aringer - , Medizinische Klinik und Poliklinik III, Universitätsklinikum Carl Gustav Carus Dresden, UniversitätsCentrum für Autoimmun- und Rheumatische Erkrankungen (UCARE) (Autor:in)
  • Laurent Arnaud - , Hôpital de Hautepierre (Autor:in)
  • Carina Boström - , Karolinska Institutet (Autor:in)
  • Ricard Cervera - , Instituto de Investigación Sanitaria Galicia Sur, Universitat de Barcelona (Autor:in)
  • Gamal Chehab - , Universität Duisburg-Essen, Heinrich Heine Universität Düsseldorf (Autor:in)
  • László Czirják - , University of Pecs (Autor:in)
  • Lene Wohlfahrt Dreyer - , Aalborg University (Autor:in)
  • Luís Inês - , University of Coimbra (Autor:in)
  • Søren Jacobsen - , Righospitalet (Autor:in)
  • Charite Kjaerside Nielsen - , Lupus Europe (Autor:in)
  • Emiliano Marasco - , IRCCS Ospedale pediatrico Bambino Gesù - Roma (Autor:in)
  • Marta Mosca - , University of Pisa (Autor:in)
  • Kirsi Myllys - , Lupus Europe (Autor:in)
  • Cristina Pamfil - , Iuliu Hatieganu University of Medicine and Pharmacy (Autor:in)
  • Jose M. Pego-Reigosa - , University Hospital Complex of Vigo (Autor:in)
  • Jutta G. Richter - , Heinrich Heine Universität Düsseldorf (Autor:in)
  • Savino Sciascia - , University of Turin (Autor:in)
  • Farah Tamirou - , Université catholique de Louvain (Autor:in)
  • Michel Tsang-A-Sjoe - , Amsterdam Reumatologie en Immunologie Centrum (Autor:in)
  • Edward M. Vital - , University of Leeds (Autor:in)
  • Ronald Van Vollenhoven - , Amsterdam Reumatologie en Immunologie Centrum (Autor:in)
  • Chris Wincup - , King's College London (KCL) (Autor:in)
  • Matthias Schneider - , Heinrich Heine Universität Düsseldorf (Autor:in)

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.

Details

OriginalspracheEnglisch
Seiten (von - bis)1621-1631
Seitenumfang11
FachzeitschriftAnnals of the rheumatic diseases
Jahrgang84
Ausgabenummer10
PublikationsstatusVeröffentlicht - Okt. 2025
Peer-Review-StatusJa

Externe IDs

PubMed 40841299
ORCID /0000-0003-4471-8375/work/202354028