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

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

doi:10.1016/j.ard.2025.07.001

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

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 TamirouMichel Tsang-A-Sjoe, Edward M Vital, Ronald Van Vollenhoven, Chris Wincup, Matthias Schneider, Taskforce for development of EULAR recommendations for a core dataset to support clinical care and translational and observational research in systemic lupus erythematosus

^*Corresponding author for this work

Department for Rheumatology and Spine Diseases

1 Citation (Scopus)

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.

Original language	English
Journal	Annals of the Rheumatic Diseases
Volume	84
Issue number	10
Pages (from-to)	1621-1631
Number of pages	11
ISSN	0003-4967
DOIs	https://doi.org/10.1016/j.ard.2025.07.001
Publication status	Published - Oct 2025

Keywords

Lupus Erythematosus, Systemic/therapy
Humans
Translational Research, Biomedical/standards
Observational Studies as Topic
Delphi Technique
Rheumatology/standards
Datasets as Topic/standards
Europe

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Mucke, J., Bertsias, G., Aringer, M., Arnaud, L., Boström, C., Cervera, R., Chehab, G., Czirják, L., Dreyer, L. W., Inês, L., Jacobsen, S., Nielsen, C. K., Marasco, E., Mosca, M., Myllys, K., Pamfil, C., Pego-Reigosa, J. M., Richter, J. G., Sciascia, S., ... Taskforce for development of EULAR recommendations for a core dataset to support clinical care and translational and observational research in systemic lupus erythematosus (2025). EULAR recommendations for a core dataset to support clinical care and translational and observational research in systemic lupus erythematosus. Annals of the Rheumatic Diseases, 84(10), 1621-1631. https://doi.org/10.1016/j.ard.2025.07.001

Mucke, J, Bertsias, G, Aringer, M, Arnaud, L, Boström, C, Cervera, R, Chehab, G, Czirják, L, Dreyer, LW, Inês, L, Jacobsen, S, Nielsen, CK, Marasco, E, Mosca, M, Myllys, K, Pamfil, C, Pego-Reigosa, JM, Richter, JG, Sciascia, S, Tamirou, F, Tsang-A-Sjoe, M, Vital, EM, Van Vollenhoven, R, Wincup, C, Schneider, M & Taskforce for development of EULAR recommendations for a core dataset to support clinical care and translational and observational research in systemic lupus erythematosus 2025, 'EULAR recommendations for a core dataset to support clinical care and translational and observational research in systemic lupus erythematosus', Annals of the Rheumatic Diseases, vol. 84, no. 10, pp. 1621-1631. https://doi.org/10.1016/j.ard.2025.07.001

@article{828675e479aa4e7281115cc96865d20c,

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

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.",

keywords = "Lupus Erythematosus, Systemic/therapy, Humans, Translational Research, Biomedical/standards, Observational Studies as Topic, Delphi Technique, Rheumatology/standards, Datasets as Topic/standards, Europe",

author = "Johanna Mucke and George Bertsias and Martin Aringer and Laurent Arnaud and Carina Bostr{\"o}m and Ricard Cervera and Gamal Chehab and L{\'a}szl{\'o} Czirj{\'a}k and Dreyer, \{Lene Wohlfahrt\} and Lu{\'i}s In{\^e}s and S{\o}ren Jacobsen and Nielsen, \{Charite Kjaerside\} and Emiliano Marasco and Marta Mosca and Kirsi Myllys and Cristina Pamfil and Pego-Reigosa, \{Jose M\} and Richter, \{Jutta G\} and Savino Sciascia and Farah Tamirou and Michel Tsang-A-Sjoe and Vital, \{Edward M\} and \{Van Vollenhoven\}, Ronald and Chris Wincup and Matthias Schneider and \{Taskforce for development of EULAR recommendations for a core dataset to support clinical care and translational and observational research in systemic lupus erythematosus\}",

year = "2025",

month = oct,

doi = "10.1016/j.ard.2025.07.001",

language = "English",

volume = "84",

pages = "1621--1631",

journal = "Annals of the Rheumatic Diseases",

issn = "0003-4967",

publisher = "Elsevier BV",

number = "10",

}

TY - JOUR

T1 - EULAR recommendations for a core dataset to support clinical care and translational and observational research in systemic lupus erythematosus

AU - Mucke, Johanna

AU - Bertsias, George

AU - Aringer, Martin

AU - Arnaud, Laurent

AU - Boström, Carina

AU - Cervera, Ricard

AU - Chehab, Gamal

AU - Czirják, László

AU - Dreyer, Lene Wohlfahrt

AU - Inês, Luís

AU - Jacobsen, Søren

AU - Nielsen, Charite Kjaerside

AU - Marasco, Emiliano

AU - Mosca, Marta

AU - Myllys, Kirsi

AU - Pamfil, Cristina

AU - Pego-Reigosa, Jose M

AU - Richter, Jutta G

AU - Sciascia, Savino

AU - Tamirou, Farah

AU - Tsang-A-Sjoe, Michel

AU - Vital, Edward M

AU - Van Vollenhoven, Ronald

AU - Wincup, Chris

AU - Schneider, Matthias

AU - Taskforce for development of EULAR recommendations for a core dataset to support clinical care and translational and observational research in systemic lupus erythematosus

PY - 2025/10

Y1 - 2025/10

N2 - 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.

AB - 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.

KW - Lupus Erythematosus, Systemic/therapy

KW - Humans

KW - Translational Research, Biomedical/standards

KW - Observational Studies as Topic

KW - Delphi Technique

KW - Rheumatology/standards

KW - Datasets as Topic/standards

KW - Europe

UR - https://www.scopus.com/pages/publications/105013796953

U2 - 10.1016/j.ard.2025.07.001

DO - 10.1016/j.ard.2025.07.001

M3 - Journal article

C2 - 40841299

SN - 0003-4967

VL - 84

SP - 1621

EP - 1631

JO - Annals of the Rheumatic Diseases

JF - Annals of the Rheumatic Diseases

IS - 10

ER -

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

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