EULAR RECOMMENDATIONS FOR A CORE DATA SET TO SUPPORT CLINICAL CARE AND TRANSLATIONAL AND OBSERVATIONAL RESEARCH IN SYSTEMIC LUPUS ERYTHEMATOSUS

PT004 / #704 Topic: AS13 - Guidelines and Recommendations POSTER TOUR 01: CLINICAL OUTCOMES IN SLE 22-05-2025 10:00 AM - 10:40 AM Background/Purpose To enhance clinical and multicenter research outcomes in systemic lupus erythematosus (SLE), standardized documentation of patient- and disease-related features is important. The aim of this 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 data set 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 (Figure 1). Figure 1. Core Data Set for SLE to support clinical care and research extension for observational and translational research ( research extension in red ) Conclusions The presented clinical core data set 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 personalized medicine in SLE care. This work was funded by a EULAR grant and was submitted on behalf of Taskforce for development of EULAR recommendations for a core data set to support clinical care and translational and observational research in systemic lupus erythematosus.

Authors

Institutions

Publication Details

Journal
The Journal of Rheumatology
Published
2025-05-20
DOI
https://doi.org/10.3899/jrheum.2025-0390.pt004
Primary Topic
Systemic Lupus Erythematosus Research
Type
article
Field-Weighted Citation Impact
0.00
Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
article

EULAR RECOMMENDATIONS FOR A CORE DATA SET TO SUPPORT CLINICAL CARE AND TRANSLATIONAL AND OBSERVATIONAL RESEARCH IN SYSTEMIC LUPUS ERYTHEMATOSUS

Luís Inês, Ronald van Vollenhoven, Savino Sciascia, Matthias Schneider et al.
The Journal of Rheumatology
Systemic Lupus Erythematosus Research
article

EULAR RECOMMENDATIONS FOR A CORE DATA SET TO SUPPORT CLINICAL CARE AND TRANSLATIONAL AND OBSERVATIONAL RESEARCH IN SYSTEMIC LUPUS ERYTHEMATOSUS

Luís Inês, Ronald van Vollenhoven, Savino Sciascia, Matthias Schneider, Cristina Pamfil, Emiliano Marasco, Edward M J Vital, Arnaud Laurent, George K Bertsias, José María Pego‐Reigosa, Farah Tamirou, Ricard Cervera, Johanna Mücke, Kirsi Myllys, Christian Nielsen, Gamal Chehab, Michel Tsang-A-Sjoe, Jutta Richter, Carina Boström, Lene Dreyer, Marta Mosca, Chris Wincup, Søren Jacobsen, Martin Aringer, László Czirják
article en

Abstract

PT004 / #704 Topic: AS13 - Guidelines and Recommendations POSTER TOUR 01: CLINICAL OUTCOMES IN SLE 22-05-2025 10:00 AM - 10:40 AM Background/Purpose To enhance clinical and multicenter research outcomes in systemic lupus erythematosus (SLE), standardized documentation of patient- and disease-related features is important. The aim of this 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 data set 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 (Figure 1). Figure 1. Core Data Set for SLE to support clinical care and research extension for observational and translational research ( research extension in red ) Conclusions The presented clinical core data set 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 personalized medicine in SLE care. This work was funded by a EULAR grant and was submitted on behalf of Taskforce for development of EULAR recommendations for a core data set to support clinical care and translational and observational research in systemic lupus erythematosus.

The Journal of RheumatologyVol. 52(Suppl 1)
University of Pisa (IT), University of Leeds (GB), Cliniques Universitaires Saint-Luc (BE), Iuliu Hațieganu University of Medicine and Pharmacy (RO), Aalborg University Hospital (DK), Hospitais da Universidade de Coimbra (PT), University Hospital Complex Of Vigo (ES), Copenhagen University Hospital (DK), Karolinska Institutet (SE), NIHR Leeds Musculoskeletal Biomedical Research Unit (GB), Hospital Clínic de Barcelona (ES), Ospedale San Giovanni Bosco (IT), Bambino Gesù Children's Hospital (IT), University Hospital of Heraklion (GR), King's College Hospital (GB), Center for Rheumatology (US), Heinrich Heine University Düsseldorf (DE), Universitat de Barcelona (ES), Technische Universität Dresden (DE), University of Pecs (HU), Aalborg University (DK)
Openalex Percentile: Top 82%
Systemic Lupus Erythematosus Research
DOIOpen Access PDFOpenAlex
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.