Demographic and clinical characteristics of patients with systemic lupus erythematosus across five registries: the LupusNet federated data network

OBJECTIVE: This study describes baseline demographics, clinical characteristics and treatments of patients diagnosed with systemic lupus erythematosus (SLE) at the time of registration in the registries of the Lupus Federated Data Network (LupusNet). METHODS: Data were collected from five SLE registries in four global regions: APLC (Asia Pacific), FORWARD (North America), RELESSER (Europe), GLADEL 2.0 and Almenara (Latin America). LupusNet uses a federated data network approach and a privacy-by-design method, where only aggregated results are shared. Demographics, disease activity (based on Physician Global Assessment (PGA) and Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2K) scores), accumulated damage (Systemic Lupus International Collaborating Clinics Damage Index) and treatment use data were mapped and harmonised using the Observational Medical Outcomes Partnership Common Data Model V.5.4. RESULTS: A total of 10 370 patients were included in the analysis; of those, 3908 patients were in Asia Pacific, 3066 in North America, 1806 in Europe and 1590 in Latin America. The majority of patients were female (91%); the median (IQR) duration from SLE diagnosis to registry entry ranged from 5 (1-12) to 12 (6-19) years. Heterogeneity in disease activity was observed across registries based on mean (SD) SLEDAI-2K total (3.0 (4.1)-7.0 (7.4)) and PGA (0.4 (0.5)-1.2 (1.0)) scores. Across registries, SLE features most common were related to serologic activity (low complement and increased DNA binding (19%-47%)); other common clinical features included proteinuria and arthritis (4%-37%). Cataracts (4%-9%) were the most common characteristic related to accumulated damage. Glucocorticoids, antimalarials and immunosuppressants were the most commonly used treatments, with variations in their proportions observed across registries. CONCLUSIONS: These findings demonstrate significant heterogeneity in clinical characteristics and treatment patterns across the registries in LupusNet. By recognising regional differences, findings from LupusNet may help guide treatment approaches in SLE and optimise patient outcomes.

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Journal
Lupus Science & Medicine
Published
2026-04-01
DOI
https://doi.org/10.1136/lupus-2025-001881
Primary Topic
Systemic Lupus Erythematosus Research
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article
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article

Demographic and clinical characteristics of patients with systemic lupus erythematosus across five registries: the LupusNet federated data network

Chak Sing Lau, Clair Blacketer, Sandra Navarra, Antonio Fernández‐Nebro et al.
Lupus Science & Medicine
Systemic Lupus Erythematosus Research
article

Demographic and clinical characteristics of patients with systemic lupus erythematosus across five registries: the LupusNet federated data network

Chak Sing Lau, Clair Blacketer, Sandra Navarra, Antonio Fernández‐Nebro, Eric Francis Morand, Martín Rebella, Cecilia Pisoni, Kaleb D. Michaud, Z A Li, Odirlei André Monticielo, J Calvo Alen, Francinne Machado Ribeiro, U. Sbarigia, C. Nunez-Alvarez, Patricia Katz, Rosana Quintana, Zulema Plaza, Worawit Louthrenoo, Federico Zazzetti, Laniyati Hamijoyo, Rangi Kandane‐Rathnayake, Sarah Gasman, Francisco Javier Narvaez García, Reyhan Sonmez, Í I Rúa-Figueroa, Anna Sheahan, Katiuzka Zuñiga, Maria Galindo Izquierdo, Manuel F. Ugarte-Gil, José María Pego-Reigosa, Guillermo J. Pons-Estel, Michel Van Speybroeck, Rocío Violeta Gamboa-Cardenas, Jorge Antonio Esquivel-Valerio, Victor Pimentel-Quiroz, Shue-Fen Luo, Erika H Noss, Eva Tomero, Verónica Saurit, Raúl Menor-Almagro, Mandana Nikpour, Alberta Hoi, Julia Martínez-Barrio, Ashley Orillion
article en

Abstract

OBJECTIVE: This study describes baseline demographics, clinical characteristics and treatments of patients diagnosed with systemic lupus erythematosus (SLE) at the time of registration in the registries of the Lupus Federated Data Network (LupusNet). METHODS: Data were collected from five SLE registries in four global regions: APLC (Asia Pacific), FORWARD (North America), RELESSER (Europe), GLADEL 2.0 and Almenara (Latin America). LupusNet uses a federated data network approach and a privacy-by-design method, where only aggregated results are shared. Demographics, disease activity (based on Physician Global Assessment (PGA) and Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2K) scores), accumulated damage (Systemic Lupus International Collaborating Clinics Damage Index) and treatment use data were mapped and harmonised using the Observational Medical Outcomes Partnership Common Data Model V.5.4. RESULTS: A total of 10 370 patients were included in the analysis; of those, 3908 patients were in Asia Pacific, 3066 in North America, 1806 in Europe and 1590 in Latin America. The majority of patients were female (91%); the median (IQR) duration from SLE diagnosis to registry entry ranged from 5 (1-12) to 12 (6-19) years. Heterogeneity in disease activity was observed across registries based on mean (SD) SLEDAI-2K total (3.0 (4.1)-7.0 (7.4)) and PGA (0.4 (0.5)-1.2 (1.0)) scores. Across registries, SLE features most common were related to serologic activity (low complement and increased DNA binding (19%-47%)); other common clinical features included proteinuria and arthritis (4%-37%). Cataracts (4%-9%) were the most common characteristic related to accumulated damage. Glucocorticoids, antimalarials and immunosuppressants were the most commonly used treatments, with variations in their proportions observed across registries. CONCLUSIONS: These findings demonstrate significant heterogeneity in clinical characteristics and treatment patterns across the registries in LupusNet. By recognising regional differences, findings from LupusNet may help guide treatment approaches in SLE and optimise patient outcomes.

Lupus Science & MedicineVol. 13(1)
University of Santo Tomas Hospital (PH), Universidade Federal do Rio Grande do Sul (BR), Johnson & Johnson (United States) (US), Universidad Autónoma de Nuevo León (MX), Chang Gung University (TW), University of California, San Francisco (US), Capgemini (Netherlands) (NL), Universidad Peruana Cayetano Heredia (PE), Peking University (CN), Universidad Científica del Sur (PE), Queen Mary Hospital (CN), Monash Medical Centre (AU), Bellvitge University Hospital (ES), University Hospital Complex Of Vigo (ES), Hospital General Universitario Gregorio Marañón (ES), Chang Gung Memorial Hospital (TW), Dr. Hasan Sadikin General Hospital (ID), Galicia Sur Biomedical Foundation (ES), Hospital Nacional Cayetano Heredia (PE), Hospital de Clínicas de Porto Alegre (BR), Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán (MX), Hospital Universitario de Gran Canaria Doctor Negrín (ES), Hospital Universitário Pedro Ernesto (BR), Hospital Universitario 12 De Octubre (ES), Hospital Regional Universitario de Málaga (ES), Hospital Universitario Araba (ES), Hospital Provincial de Rosario (AR), Institute for Musculoskeletal Health (AU), Peking University People's Hospital (CN), Hospital Universitario de La Princesa (ES), Centro de Educación Médica e Investigaciones Clínicas Norberto Quirno (AR), Spanish Society of Hematology and Hemotherapy (ES), Hospital Privado (AR), Hospital Jerez Puerta del Sur (ES), Hospital de Clínicas (UY), Hospital Base Guillermo Almenara Irigoyen (PE), Chiang Mai University (TH), Monash University (AU), University of Nebraska Medical Center (US), University of Hong Kong (HK), Padjadjaran University (ID)
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Systemic Lupus Erythematosus Research
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