Demographic and clinical characteristics of patients with systemic lupus erythematosus across five registries: the LupusNet federated data network
Year: 2026
Type: article
Study design: Observational Study
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.
Source: Lupus Science & Medicine
Authors: Federico Zazzetti, Ashley Orillion, Urbano Sbarigia, Anna Sheahan, Clair Blacketer, Michel van Speybroeck, Sarah Gasman, Reyhan Sönmez, Erika H Noss, Manuel F Ugarte-Gil, Rocio Violeta Gamboa-Cardenas, Victor Pimentel-Quiroz, Guillermo J Pons-Estel, Rosana Quintana, Verónica Saurit, Cecilia Nora Pisoni, Odirlei Andre Monticielo, Francinne Machado Ribeiro, Jorge A Esquivel-Valerio, Carlos A Núñez-Álvarez, Katiuzka Zuñiga, Martin Rebella, Kaleb Michaud, Patricia Katz, Rangi Kandane-Rathnayake, Eric F Morand, Worawit Louthrenoo, Alberta Hoi, Mandana Nikpour, Sandra Navarra, Chak Sing Lau, Shue-Fen Luo, Laniyati Hamijoyo, Zhanguo Li, José María Pego-Reigosa, Iñigo Rúa-Figueroa, Zulema Plaza, María Galindo Izquierdo, Julia Martínez-Barrio, Jaime Calvo Alén, Antonio Fernández-Nebro, Raúl Menor-Almagro, Eva Tomero, Francisco Javier Narváez García
Institutions: Johnson & Johnson (United States), Universidad Científica del Sur, EsSALUD, Hospital Base Guillermo Almenara Irigoyen, Hospital Privado, Centro de Educación Médica e Investigaciones Clínicas Norberto Quirno, Universidade Federal do Rio Grande do Sul, Hospital de Clínicas de Porto Alegre, Universidade do Estado do Rio de Janeiro, Hospital Universitário Pedro Ernesto, Universidad Autónoma de Nuevo León, Hospital Universitario Dr José Eleuterio Gonzalez, Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Universidad Peruana Cayetano Heredia, Hospital Nacional Cayetano Heredia, Hospital de Clínicas, University of Nebraska Medical Center, University of California, San Francisco, Monash University, Chiang Mai University, The University of Sydney, University of Santo Tomas Hospital, Queen Mary Hospital, University of Hong Kong, Chang Gung University, Chang Gung Memorial Hospital, Dr. Hasan Sadikin General Hospital, Padjadjaran University, Peking University, Peking University People's Hospital, University Hospital Complex Of Vigo, Hospital Universitario de Gran Canaria Doctor Negrín, Hospital Universitario 12 De Octubre, Hospital General Universitario Gregorio Marañón, Hospital Universitario Araba, Hospital Regional Universitario de Málaga, Instituto de Investigación Biomédica de Málaga, Hospital Universitario de Jerez, Hospital Universitario de La Princesa, Bellvitge University Hospital
Language: English
Subfield: Rheumatology
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $2,391
Funder: Johnson and Johnson
OpenAlex ID: W7153043826