Background: Systemic lupus erythematosus (SLE) is an autoimmune rheumatic disease characterized by a heterogeneous clinical presentation and periods of flare and remission, with variability in management across different parts of the world. Overall, the goal of managing SLE is to achieve and maintain low disease activity or remission to prevent flares, minimize long-term damage, and reduce organ damage accrual. Disease activity, flare rates, and organ damage accrual data in SLE can vary widely, especially by time from diagnosis. The Lupus federated data Network (LupusNet) is the largest existing federated data source and the first that aims to combine and harmonize data from 5 existing SLE registries, allowing for greater data consistency and better understanding of clinical presentation and outcomes of SLE globally.

Objectives: To analyze disease activity, flare, and organ damage accrual by time from SLE diagnosis in real-world patients.

Methods: Data from 5 SLE registries from 4 geographic regions were mapped in LupusNet: APLC (Asia Pacific), RELESSER (Europe), FORWARD (North America), and Almenara and GLADEL (Central and South America). LupusNet uses a privacy-preserving federated data network approach, where the data remain with the respective registries and only aggregated results are shared. Disease activity and flares were assessed using the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) for Almenara, APLC, GLADEL, and RELESSER, collected at registration and follow-up visits and the Systemic Lupus Activity Questionnaire (SLAQ) for FORWARD, collected 6 months after registration and at subsequent follow-up visits. Accumulated organ damage was measured using the SLICC Damage Index (SDI) for Almenara, APLC, GLADEL and RELESSER, collected at registration and follow-up visits. Descriptive statistics are presented.

Results: To date, a total of 10,267 patients were mapped and included in analyses; of those, 3,908 patients were in Asia Pacific, 3,066 in North America, 1,806 in Europe, and 1,487 in Central and South America. Across the 5 registries, the mean (standard deviation [SD]) duration from SLE diagnosis to registry entry varied from 6.8 (6.4) to 13.3 (8.9) years. At registration, the mean (SD) SLEDAI score ranged from 3.0 (4.1) to 7.2 (7.6). During follow-up, the mean (SD) SLEDAI score, stratified by time between diagnosis and registration, ranged from 1.8 (2.2) to 6.1 (6.3) for the <2 years subgroup, 2.6 (2.9) to 3.7 (4.4) for the 2-10 years subgroup, and 2.7 (2.9) to 3.3 (4.2) for the >10 years subgroup (Figure 1). The mean (SD) SLAQ score by time between diagnosis and registry entry ranged from 9.7 (8.4) to 29.5 (19.3) for the <2 years subgroup, 12.1 (8.6) to 19.4 (11.8) for the 2-10 years subgroup, and 12.2 (10.0) to 18.0 (12.6) for the >10 years subgroup (Figure 2). At registration, 1%-6% of patients had received biologics/advanced therapies and 1%-4% had been treated with immunomodulators across the various registries. Across visits and registries, an average of 19% (range, 15%-21%) of patients experienced a flare that was captured at a follow-up visit, with higher SLEDAI scores observed at earlier visits. The most common SLEDAI features observed during follow-up were consistent with those observed at registration (eg, low complement, increased anti-dsDNA antibody, nephritis [ie, proteinuria, pyuria, hematuria, and urinary casts], arthritis, rash, alopecia and leukopenia), with some variation across registries, particularly related to mucosal ulcers and thrombocytopenia. Younger patients (<40 years) also had slightly higher SLEDAI scores at follow-up visits than older patients. In Almenara, APLC, and RELESSER, of patients presenting with SDI >0 over follow-up visits, 39% (range, 16%-72%) developed organ damage. Among combined patients in these registries with SLEDAI = 0 at a follow-up visit, 33% (range, 27%-41%) presented with organ damage (SDI >0).

Conclusion: These findings demonstrate that after inclusion in LupusNet, patients with SLE had stable disease activity during follow-up compared with time of registry entry, and up to 25% of patients across registries experienced disease flares that were captured during follow-up visits. Controlling SLE disease activity, preventing flares, and reducing organ damage accrual remains challenging despite the availability of current treatments. Further investigation into patterns of disease activity, damage accrual, and treatment trajectories is essential to identify opportunities for minimizing long-term organ damage. Future research within LupusNet may help identify subgroups of patients with the highest levels of disease activity and inform key areas in need of therapeutic advances.

REFERENCES: NIL.

Figure 1.

Mean SLEDAI Score Over Time by Time from Diagnosis to Registration.SLEDAI, Systemic Lupus Erythematosus Disease Activity Index.

Figure 2.

Mean SLAQ Score Over Time by Time from Diagnosis to Registration. SLAQ, Systemic Lupus Activity Questionnaire.

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Disclosure of Interests: Federico Zazzetti Johnson & Johnson, Johnson & Johnson, Ashley Orillion, PhD Johnson & Johnson, Johnson & Johnson, Urbano Sbarigia Johnson & Johnson, Johnson & Johnson, Anna Sheahan Johnson & Johnson, Johnson & Johnson, Clair Blacketer Johnson & Johnson, Johnson & Johnson, Michel van Speybroeck Johnson & Johnson, Johnson & Johnson, Sarah Gasman Johnson & Johnson, Johnson & Johnson, Reyhan Sonmez Johnson & Johnson, Johnson & Johnson, Manuel Ugarte-Gil GSK and Aztra-Zeneca. Advisory boards: Aztra-Zeneca and Ferrer, Janssen, Rocío V. Gamboa-Cardenas: None declared, Victor Pimentel-Quiroz: None declared, Guillermo Javier Pons Estel AstraZeneca, Boehringer Ingelheim, GSK, Janssen, Novartis, Pfizer, RemeGen, Sanofi and Werfen Diagnostics, AstraZeneca, Boehringer Ingelheim, GSK, Janssen, Novartis, Pfizer, RemeGen, Sanofi and Werfen Diagnostics, AstraZeneca, Boehringer Ingelheim, GSK, Janssen, Novartis, Pfizer, RemeGen, Sanofi and Werfen Diagnostics, Rosana Quintana: None declared, Verónica Saurit: None declared, Cecilia Pisoni: None declared, Odirlei André Monticielo: None declared, Francinne Machado Ribeiro: None declared, Jorge Antonio Esquivel-Valerio: None declared, Carlos Núñez Álvarez: None declared, Katiuska Zuñiga Corrales: None declared, Martin Rebella: None declared, Kaleb Michaud: None declared, Patricia Katz: None declared, Rangi Kandane-Rathnayake GSK and Novartis, Eric Morand: None declared, Worawit Louthrenoo: None declared, Alberta Hoi: None declared, Mandana Nikpour: None declared, Sandra Navarra Astellas, AstraZeneca, Aurinia, Biogen, and Idorsia, Astellas, AstraZeneca, Aurinia, Biogen, and Idorsia, Chak Sing Lau: None declared, Shue Fen Luo: None declared, Laniyati Hamijoyo: None declared, Íñigo Jesus Rúa-Figueroa: None declared, Zulema Plaza: None declared, Maria Galindo: None declared, Julia Martínez-Barrio: None declared, Jaime Calvo Alén: None declared, Antonio Fernández-Nebro AstraZeneca, Eli Lilly, Galapagos, Gebro Pharma, GSK, and Novartis, AstraZeneca, Eli Lilly, Galapagos, Gebro Pharma, GSK, and Novartis, Argenx, AstraZeneca, Chemo, Galapagos, Janssen, Merck Serono, MSD, Novartis, Takeda, and UCB, Raúl Menor-Almagro: None declared, Francisco Javier Narváez Garcia: None declared, Chetan S Karyekar Johnson & Johnson, Johnson & Johnson.

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