Demographic and clinical characteristics of patients with systemic lupus erythematosus across five registries: the LupusNet federated data network.
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Zazzetti Federico, Orillion Ashley, Sbarigia Urbano, Sheahan Anna, Blacketer Clair, van Speybroeck Michel, Gasman Sarah, Sönmez Reyhan, Noss Erika H, Ugarte-Gil Manuel F, Gamboa-Cardenas Rocio Violeta, Pimentel-Quiroz Victor, Pons-Estel Guillermo J, Quintana Rosana, Saurit Verónica, Pisoni Cecilia Nora, Monticielo Odirlei Andre, Ribeiro Francinne Machado, Esquivel-Valerio Jorge A, Núñez-Álvarez Carlos A, Zuñiga Katiuzka, Rebella Martin, Michaud Kaleb, Katz Patricia, Kandane-Rathnayake Rangi, Morand Eric F, Louthrenoo Worawit, Hoi Alberta, Nikpour Mandana, Navarra Sandra, Lau Chak Sing, Luo Shue-Fen, Hamijoyo Laniyati, Li Zhanguo, Pego-Reigosa José María, Rúa-Figueroa Iñigo, Plaza Zulema, Galindo Izquierdo María, Martínez-Barrio Julia, Calvo Alén Jaime, Fernández-Nebro Antonio, Menor-Almagro Raúl, Tomero Eva, Narváez García Francisco Javier
Аннотация
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.