{
  "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.",
  "authors": [
    {
      "affiliations": [
        "Johnson & Johnson, Horsham, Pennsylvania, USA"
      ],
      "name": "Federico Zazzetti"
    },
    {
      "affiliations": [
        "Johnson & Johnson, Spring House, Pennsylvania, USA"
      ],
      "name": "Ashley Orillion"
    },
    {
      "affiliations": [
        "Johnson & Johnson, Beerse, Belgium"
      ],
      "name": "Urbano Sbarigia"
    },
    {
      "affiliations": [
        "Johnson & Johnson, Horsham, Pennsylvania, USA"
      ],
      "name": "Anna Sheahan"
    },
    {
      "affiliations": [
        "Johnson & Johnson, Spring House, Pennsylvania, USA"
      ],
      "name": "Clair Blacketer"
    },
    {
      "affiliations": [
        "Johnson & Johnson, Beerse, Belgium"
      ],
      "name": "Michel van Speybroeck"
    },
    {
      "affiliations": [
        "Johnson & Johnson, Spring House, Pennsylvania, USA"
      ],
      "name": "Sarah Gasman"
    },
    {
      "affiliations": [
        "Capgemini Consulting, Zurich, Switzerland"
      ],
      "name": "Reyhan Sönmez"
    },
    {
      "affiliations": [
        "Johnson & Johnson, Spring House, Pennsylvania, USA"
      ],
      "name": "Erika H Noss"
    },
    {
      "affiliations": [
        "Grupo Peruano de Estudio de Enfermedades Autoinmunes Sistémicas, Universidad Cientifica del Sur, Lima, Peru",
        "Rheumatology Department, Hospital Guillermo Almenara Irigoyen, EsSalud, Lima, Peru"
      ],
      "name": "Manuel F Ugarte-Gil"
    },
    {
      "affiliations": [
        "Grupo Peruano de Estudio de Enfermedades Autoinmunes Sistémicas, Universidad Cientifica del Sur, Lima, Peru",
        "Rheumatology Department, Hospital Guillermo Almenara Irigoyen, EsSalud, Lima, Peru"
      ],
      "name": "Rocio Violeta Gamboa-Cardenas"
    },
    {
      "affiliations": [
        "Grupo Peruano de Estudio de Enfermedades Autoinmunes Sistémicas, Universidad Cientifica del Sur, Lima, Peru",
        "Rheumatology Department, Hospital Guillermo Almenara Irigoyen, EsSalud, Lima, Peru"
      ],
      "name": "Victor Pimentel-Quiroz"
    },
    {
      "affiliations": [
        "Grupo Oroño-Centro Regional de Enfermedades Autoinmunes y Reumáticas (GO-CREAR), Rosario, Argentina"
      ],
      "name": "Guillermo J Pons-Estel"
    },
    {
      "affiliations": [
        "Grupo Oroño-Centro Regional de Enfermedades Autoinmunes y Reumáticas (GO-CREAR), Rosario, Argentina"
      ],
      "name": "Rosana Quintana"
    },
    {
      "affiliations": [
        "Hospital Privado Universitario de Córdoba, Córdoba, Argentina"
      ],
      "name": "Verónica Saurit"
    },
    {
      "affiliations": [
        "CEMIC Centro de Educación Médica e Investigaciones Clínicas \"Norberto Quirno\", Buenos Aires, Argentina"
      ],
      "name": "Cecilia Nora Pisoni"
    },
    {
      "affiliations": [
        "Division of Rheumatology, Department of Internal Medicine, Hospital de Clínicas de Porto Alegre, Universidade Federal do Rio Grande do Sul, Porto Alegre, Brazil"
      ],
      "name": "Odirlei Andre Monticielo"
    },
    {
      "affiliations": [
        "Hospital Universitário Pedro Ernesto - Universidade do Estado do Rio de Janeiro, Rio de Janeiro, Brazil"
      ],
      "name": "Francinne Machado Ribeiro"
    },
    {
      "affiliations": [
        "Servicio de Reumatología, Hospital Universitario “Dr. José Eleuterio González,” Universidad Autónoma de Nuevo León, Nuevo León, Mexico"
      ],
      "name": "Jorge A Esquivel-Valerio"
    },
    {
      "affiliations": [
        "Department of Immunology and Rheumatology, Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Tlalpan, Mexico"
      ],
      "name": "Carlos A Núñez-Álvarez"
    },
    {
      "affiliations": [
        "Servicio de Inmunología y Reumatología, Hospital Nacional Cayetano Heredia, Universidad Peruana Cayetano Heredia, Lima, Peru"
      ],
      "name": "Katiuzka Zuñiga"
    },
    {
      "affiliations": [
        "Unidad de Enfermedades Autoinmunes Sistémicas, Hospital de Clínicas, Facultad de Medicina, UDELAR, Montevideo, Uruguay"
      ],
      "name": "Martin Rebella"
    },
    {
      "affiliations": [
        "University of Nebraska Medical Center, Omaha, Nebraska, USA"
      ],
      "name": "Kaleb Michaud"
    },
    {
      "affiliations": [
        "University of California San Francisco, San Francisco, California, USA"
      ],
      "name": "Patricia Katz"
    },
    {
      "affiliations": [
        "Rheumatology Research Group, Centre for Inflammatory Diseases, School of Clinical Sciences, Monash University, Clayton, Victoria, Australia"
      ],
      "name": "Rangi Kandane-Rathnayake"
    },
    {
      "affiliations": [
        "Rheumatology Research Group, Centre for Inflammatory Diseases, School of Clinical Sciences, Monash University, Clayton, Victoria, Australia"
      ],
      "name": "Eric F Morand"
    },
    {
      "affiliations": [
        "Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Chiang Mai University, Chiang Mai, Thailand"
      ],
      "name": "Worawit Louthrenoo"
    },
    {
      "affiliations": [
        "Rheumatology Research Group, Centre for Inflammatory Diseases, School of Clinical Sciences, Monash University, Clayton, Victoria, Australia"
      ],
      "name": "Alberta Hoi"
    },
    {
      "affiliations": [
        "Musculoskeletal Research Centre and School of Public Health, The University of Sydney, Sydney, New South Wales, Australia"
      ],
      "name": "Mandana Nikpour"
    },
    {
      "affiliations": [
        "Section of Rheumatology, University of Santo Tomas Hospital, Manila, Philippines"
      ],
      "name": "Sandra Navarra"
    },
    {
      "affiliations": [
        "Division of Rheumatology & Clinical Immunology, Department of Medicine, Queen Mary Hospital, The University of Hong Kong, Pok Fu Lam, Hong Kong"
      ],
      "name": "Chak Sing Lau"
    },
    {
      "affiliations": [
        "Department of Rheumatology, Allergy and Immunology, Chang Gung Memorial Hospital, Chang Gung University, Taipei, Taiwan"
      ],
      "name": "Shue-Fen Luo"
    },
    {
      "affiliations": [
        "Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Padjadjaran University/Hasan Sadikin General Hospital, Bandung, Indonesia"
      ],
      "name": "Laniyati Hamijoyo"
    },
    {
      "affiliations": [
        "Department of Rheumatology and Immunology, Beijing University People’s Hospital, Beijing, China"
      ],
      "name": "Zhanguo Li"
    },
    {
      "affiliations": [
        "Department of Rheumatology, University Hospital of Vigo, Vigo, Spain",
        "IRIDIS Group (Investigation in Rheumatology and Immune-Diseases), Galicia Sur Health Research Institute, Vigo, Spain"
      ],
      "name": "José María Pego-Reigosa"
    },
    {
      "affiliations": [
        "Department of Rheumatology, Hospital Universitario Doctor Negrín, Las Palmas de Gran Canaria, Spain"
      ],
      "name": "Iñigo Rúa-Figueroa"
    },
    {
      "affiliations": [
        "Research Unit, Spanish Society of Rheumatology, Madrid, Spain"
      ],
      "name": "Zulema Plaza"
    },
    {
      "affiliations": [
        "Department of Rheumatology, Hospital Universitario 12 de Octubre, Madrid, Spain"
      ],
      "name": "María Galindo Izquierdo"
    },
    {
      "affiliations": [
        "Department of Rheumatology, Hospital Gregorio Marañón, Madrid, Spain"
      ],
      "name": "Julia Martínez-Barrio"
    },
    {
      "affiliations": [
        "Department of Rheumatology, Hospital Universitario Araba, Vitoria, Spain"
      ],
      "name": "Jaime Calvo Alén"
    },
    {
      "affiliations": [
        "Department of Rheumatology, Hospital Regional Universitario de Málaga, IBIMA-Bionand Platform, Málaga, Spain"
      ],
      "name": "Antonio Fernández-Nebro"
    },
    {
      "affiliations": [
        "Department of Rheumatology, Hospital de Jerez, Jerez, Spain"
      ],
      "name": "Raúl Menor-Almagro"
    },
    {
      "affiliations": [
        "Department of Rheumatology, Hospital Universitario de la Princesa, Madrid, Spain"
      ],
      "name": "Eva Tomero"
    },
    {
      "affiliations": [
        "Department of Rheumatology, Hospital Universitari de Bellvitge, Barcelona, Spain"
      ],
      "name": "Francisco Javier Narváez García"
    }
  ],
  "title": "Demographic and clinical characteristics of patients with systemic lupus erythematosus across five registries: the LupusNet federated data network",
  "uid": "c65f6f44-68fd-5c4d-b1b3-39ccf7d8ea69"
}