Regional Variability in SLE Damage Accumulation by Disease Activity Across the Lupus Federated Data Network (LupusNet)

Manuel Ugarte-Gil¹, Sarah Gasman², Federico Zazzetti³, Ashley Orillion², Anna Sheahan⁴, Clair Blacketer², Michel van Speybroeck⁵, Reyhan Sonmez⁶, Erika Noss², Rocío Gamboa-Cárdenas⁷, Víctor Pimentel-Quiroz⁸, Kaleb Michaud⁹, Patti Katz¹⁰, Rangi Kandane-Rathnayake¹¹, Eric Morand¹², Worawit Louthrenoo¹³, Alberta Hoi¹⁴, Yi-Hsing Chen¹⁵, Jiacai Cho¹⁶, Laniyati Hamijoyo¹⁷, Shue Fen Luo¹⁸, Sandra Navarra¹⁹, Mandana Nikpour²⁰, José María Pego-Reigosa²¹, Iñigo Rúa-Figueroa²², Zulema Plaza²³, Maria Galindo-Izquierdo²⁴, Julia Martínez Barrio²⁵, Jaime Calvo²⁶, Antonio Fernández-Nebro²⁷, Raúl Menor Almagro²⁸, EVA GLORIA TOMERO MURIEL²⁹, Javier Narváez³⁰ and Chetan S. Karyekar³¹, ¹Grupo Peruano de Estudio de Enfermedades Autoinmunes Sistémicas, Universidad Científica del Sur, Lima, Peru; Hospital Guillermo Almenara Irigoyen, EsSalud, Lima, Peru, Lima, Peru, ²Johnson & Johnson, Spring House, PA, USA, Spring House, PA, ³Johnson & Johnson, Horsham, PA, USA, Ambler, PA, ⁴Johnson & Johnson, Horsham, PA, USA, Horhsam, PA, ⁵Johnson & Johnson, Beerse, Belgium, Beerse, Belgium, ⁶Capgemini Consulting, Zurich, Switzerland, Zurich, Switzerland, ⁷Universidad Científica del Sur, Lima, Peru, ⁸Grupo Peruano de Estudio de Enfermedades Autoinmunes Sistémicas, Universidad Científica del Sur, Lima, Perú; Rheumatology Department, Hospital Guillermo Almenara Irigoyen, EsSalud, Lima, Perú, Lima, Peru, ⁹University of Nebraska Medical Center, Omaha, NE, ¹⁰UCSF, San Rafael, CA, ¹¹Center for Inflammatory Diseases, Monash University, Clayton, Victoria, Australia, ¹²Centre for Inflammatory Diseases, Monash University and Monash Health, Melbourne, Victoria, Australia, ¹³Chiang Mai University Hospital, Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Chiang Mai, Thailand, Chiang Mai, Thailand, ¹⁴Centre for Inflammatory Diseases, Monash University and Department of Rheumatology, Monash Health, Clayton, Victoria, Australia, ¹⁵Taichung Veterans General Hospital, Division of Allergy, Immunology and Rheumatology, Taichung, Taiwan, Taichung, Taiwan (Republic of China), ¹⁶National University Hospital, Rheumatology Division, Department of Medicine, Singapore, Singapore, Singapore, Singapore, ¹⁷Padjadjaran University/Hasan Sadikin General Hospital, Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Bandung, Indonesia, Badung, Indonesia, ¹⁸Chang Gung Memorial Hospital, Chang Gung University, Department of Rheumatology, Allergy and Immunology, Taipei, Taiwan, Taoyuan, Taiwan (Republic of China), ¹⁹University of Santo Tomas, Manila, Philippines, ²⁰University of Sydney, School of Public Health, Faculty of Medicine and Health, Sydney, New South Wales, Australia; St Vincent’s Hospital Melbourne, Department of Rheumatology, Fitzroy, Victoria, Australia, Melbourne, Victoria, Australia, ²¹Department of Rheumatology, University Hospital of Vigo, Vigo, Spain; IRIDIS Group (Investigation in Rheumatology and Immune-Diseases), Galicia Sur Health Research Institute, Vigo, Spain, ²²Hospital de Gran Canaria Doctor Negrin, Las Palmas GC, Spain, ²³Research Unit, Spanish Society of Rheumatology, Madrid, Spain, Madrid, Spain, ²⁴Department of Rheumatology, Hospital Universitario ¹² de Octubre, Madrid, Spain, Madrid, Spain, ²⁵Department of Rheumatology, Hospital Gregorio Marañón, Madrid, Spain, Madrid, Madrid, Spain, ²⁶Department of Rheumatology, Hospital Universitario Araba, School of Medicne, Universidad del País Vasco, BIOARABA Health Research Institute, Vitoria, Spain, Vitoria, Pais Vasco, Spain, ²⁷Hospital Regional Universitario de Malaga, Malaga, Spain, Malaga, Spain, ²⁸Department of Rheumatology, Hospital de Jerez, Spain, Puerto De Santa María, Spain, ²⁹Hospital Universitario de la Princesa, Madrid, Spain, ³⁰Hospital Universitario de Bellvitge, Barcelona, Spain, ³¹Johnson & Johnson, Spring House, PA, USA, Spring House

Meeting: ACR Convergence 2025

Keywords: Damage Index, registry, signal transduction

Session Information

Date: Tuesday, October 28, 2025

Title: (1877–1913) Epidemiology & Public Health Poster III

Session Type: Poster Session C

Session Time: 10:30AM-12:30PM

Background/Purpose: SLE is characterized by heterogeneous clinical presentation and periods of flare and remission, with variation in management globally. A goal for SLE management is to achieve and maintain remission or low disease activity to minimize long-term accrual of organ damage. This goal of this study is to assess the frequency, severity, and accrual of damage in patients with SLE as a function of disease activity using LupusNet, the largest existing federated data network in SLE. LupusNet combines and harmonizes data from 5 existing SLE registries, which enables data consistency and enhances understanding of global clinical presentations and outcomes of SLE.

Methods: Data from patients with ≥3 years of follow-up and ≥3 follow-up visits in 3 of 5 LupusNet registries, APLC (Asia Pacific), RELESSER (Europe), and Almenara (South America), were analyzed using a privacy-preserving federated data network approach where only aggregated results were shared. Disease activity was assessed using SLEDAI (recorded at least once a year) and organ damage was measured using SLICC Damage Index (SDI score >0). High disease activity (HDA) was defined as a SLEDAI score >8 at ≥1 visit. The proportion of patients experiencing HDA over the 3-year observation period and the presence of organ damage were reported.

Results: A total of 5019 patients from LupusNet were included. At baseline, 34%, 41%, and 48% of patients had damage in APLC, RELESSER, and Almenara, respectively. At any time over the 3-year follow up, 36% of patients in APLC, 18% in RELESSER, and 24% in Almenara experienced HDA; after 3 years, damage occurred in 44% of patients in APLC, 23% in RELESSER, and 66% in Almenara, and was similar between patients with HDA (32%-68%) and without HDA (20%-66%) across cohorts (Figure 1). However, renal, ocular, and skin damage were more prevalent in patients who experienced HDA compared to those without HDA (Figure 2). Regional variations were evident in the types of organ damage observed, with renal and musculoskeletal damage being consistently prominent across regions. Notably, ocular damage was more prevalent in RELESSER, while gastrointestinal damage was more prevalent in Almenara. The prevalence of most types of organ damage was lower in APLC compared to Almenara and RELESSER. When analyzed by the proportion of visits with HDA, patients who had SLEDAI >8 at more visits exhibited higher rates of proteinuria, haematuria, urinary casts, and pyuria compared to patients without visits with SLEDAI >8. Low complement and high DNA binding were commonly observed irrespective of disease activity (Figure 3).

Conclusion: Despite the well-known link between disease activity and damage accrual, this analysis revealed similar overall rates of damage between patients with and without HDA. However, renal, ocular, and skin damage were more prevalent in patients with HDA. Moreover, regional variations in damage types underscore the complexity of SLE. These findings provide further insights into damage accrual as a function of disease activity in patients with SLE, highlighting the impact of disease activity on certain types of damage and the need for further research to identify factors driving these disparities.

Disclosures: M. Ugarte-Gil: AstraZeneca, 2, 6, Ferrer, 2, 6, GSK, 2, 6, Johnson & Johnson, 5, Novartis, 2, 6, Tecnofarma, 2, 6; S. Gasman: Johnson & Johnson, 3, 12, may hold stock options; F. Zazzetti: Johnson & Johnson, 3, 11; A. Orillion: Johnson & Johnson, 3, 11; A. Sheahan: Johnson & Johnson, 3, 12, may hold stock options; C. Blacketer: Johnson & Johnson, 3, 12, may hold stock options; M. van Speybroeck: Johnson & Johnson, 3, 12, may hold stock options; R. Sonmez: Johnson & Johnson, 2, 12, may hold stock options; E. Noss: Johnson & Johnson, 3, 12, may hold stock options; R. Gamboa-Cárdenas: None; V. Pimentel-Quiroz: None; K. Michaud: None; P. Katz: None; R. Kandane-Rathnayake: Bristol-Myers Squibb(BMS), 5, GlaxoSmithKline (GSK), 5, Novartis, 5; E. Morand: AbbVie, 2, 5, Amgen, 5, AstraZeneca, 1, 2, 5, 6, Biogen, 1, 2, 5, 6, Bristol Meyers Squibb, 1, 2, 5, 6, Dragonfly, 1, 2, 6, Eli Lilly, 1, 2, 5, 6, EMD Serono, 1, 2, 5, 6, Genentech, 5, GSK, 1, 2, 5, 6, Johnson & Johnson, 5, Novartis, 2, 5, 6, Quell, 1, 2, 6, Remegen, 1, 2, 6, Takeda, 5, UCB, 1, 2, 5, Zenas, 1, 2, 6; W. Louthrenoo: None; A. Hoi: AstraZeneca, 1, 5, 12, contract research, Bristol-Myers Squibb(BMS), 5, Eli Lilly, 5, GlaxoSmithKline (GSK), 1, Johnson & Johnson, 1, Merck/MSD, 12, contract research, UCB, 5; Y. Chen: Abbvie, 12,, 2, 6, Agnitio Science Technology, 2, 6, Astellas, 12,, 2, 6, AstraZeneca, 12,, 2, 6, Biogen, 12,, BMS, 12,, 2, 6, Boehringer-Ingelheim, 12,, Celldex, 12,, CSL Behring, 2, 6, Eisai, 2, 6, Gilead, 12,, 2, 6, GSK, 12,, 2, 6, Guigai, 12,, 2, 6, Inova Diagnostics, 2, 5, Johnson & Johnson, 12,, 2, 6, Lilly, 2, 6, Medigen Vaccine Biologics, 12,, MSD, 12,, 2, 6, Novartis, 2, 6, Pfizer, 12,, 2, 6, Roche, 12,, Sanofi, 12,, 2, 6, Taichung Veterans General Hospital, 12,, Taiwan Department of Health, 12,, Taiwan Ministry of Science and Technology, 12,, Thermo Fisher, 2, 6, UCB, 12,, 2, 6, United Biopharma, 2, 6; J. Cho: None; L. Hamijoyo: None; S. Luo: None; S. Navarra: Astellas, 2, 6, AstraZeneca, 2, 6, Aurinia, 2, 6, Biogen, 2, 12, Independent Data Monitoring Committee, Viatris (Idorsia), 2, 6; M. Nikpour: AstraZeneca, 2, 6, Boehringer-Ingelheim, 2, 6, Bristol-Myers Squibb(BMS), 2, 6, GlaxoSmithKline (GSK), 2, 6, Johnson & Johnson, 2, 6; J. Pego-Reigosa: AstraZeneca, 1, 5, 6, GlaxoSmithKline (GSK), 1, 5, 6, Otsuka, 1, 6; I. Rúa-Figueroa: None; Z. Plaza: None; M. Galindo-Izquierdo: None; J. Martínez Barrio: None; J. Calvo: None; A. Fernández-Nebro: Argenx, 5, AstraZeneca, 2, 5, 6, Chemo, 5, Eli Lilly, 2, 6, Galapagos, 2, 5, 6, Gebro Pharma, 2, 6, GlaxoSmithKline (GSK), 2, 6, Johnson & Johnson, 5, Merck Serono, 5, MSD, 5, Novartis, 2, 5, 6, Takeda, 5, UCB, 5; R. Menor Almagro: None; E. TOMERO MURIEL: None; J. Narváez: None; C. Karyekar: Johnson & Johnson, 12, Former employee and may hold stock options.

To cite this abstract in AMA style:

Ugarte-Gil M, Gasman S, Zazzetti F, Orillion A, Sheahan A, Blacketer C, van Speybroeck M, Sonmez R, Noss E, Gamboa-Cárdenas R, Pimentel-Quiroz V, Michaud K, Katz P, Kandane-Rathnayake R, Morand E, Louthrenoo W, Hoi A, Chen Y, Cho J, Hamijoyo L, Luo S, Navarra S, Nikpour M, Pego-Reigosa J, Rúa-Figueroa I, Plaza Z, Galindo-Izquierdo M, Martínez Barrio J, Calvo J, Fernández-Nebro A, Menor Almagro R, TOMERO MURIEL E, Narváez J, Karyekar C. Regional Variability in SLE Damage Accumulation by Disease Activity Across the Lupus Federated Data Network (LupusNet) [abstract]. Arthritis Rheumatol. 2025; 77 (suppl 9). https://acrabstracts.org/abstract/regional-variability-in-sle-damage-accumulation-by-disease-activity-across-the-lupus-federated-data-network-lupusnet/. Accessed .

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