AB1553-HPR BASELINE CHARACTERISTICS OF PATIENTS WITH SLE ACROSS 5 REGISTRIES – THE LUPUSNET FEDERATED DATA NETWORK
Authors: U. Sbarigia, F. Zazzetti, M. Lewi, M. Van Speybroeck, T. A. Simon, G. Li, R. Sonmez, C. Carter, C. S. Karyekar, W. Noel, M. F. Ugarte-Gil, R. V. Gamboa-Cardenas, G. Pons-Estel, E. F. Borba, L. Massardo, G. Aroca Martínez, R. Muñoz Louis, M. Moreno Alvarez, I. García De La Torre, I. Acosta Colmán, C. Mora Trujillo, Á. Danza, K. Michaud, P. Katz, R. Kandane-Rathnayake, E. Morand, W. Louthrenoo, Y. H. Chen, J. Cho, L. Hamijoyo, S. F. Luo, Y. J. Jan Wu, S. Navarra, Z. LI, S. Sockalingam, M. Harigai, Z. Zhang, D. Basnayake, M. Chan, T. Takeuchi, S. C. Bae, F. Goldblatt, S. O ’neill, K. P. L. Ng, N. Tugnet, S. Kumar, M. Tee, Y. Tanaka, C. S. Lau, A. Hoi, M. Nikpour, Í. Rúa-Figueroa, J. M. Pego-Reigosa, M. Galindo-Izquierdo, J. Calvo Alén, A. Fernández-Nebro, R. Menor-Almagro, F. Lavie
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> Systemic lupus erythematosus (SLE) is an autoimmune disease with a broad range of clinical manifestations and a high unmet need across patient populations. Real-world data on SLE are scattered across &gt;50 registries worldwide with variable data collection. The Lupus Federated Data Network (LupusNet) is an interdisciplinary international initiative that aims to combine and harmonize data from existing local SLE registries to create a global, federated, unified, SLE database with a larger number of patients and greater data consistency. <h3>Objectives:</h3> To describe the baseline demographic and chronologic characteristics of patients with SLE from 5 registries and the methods for harmonization of these data in LupusNet. <h3>Methods:</h3> Data from 5 registries representing ~10,000 patients with SLE from 4 regions contributed to LupusNet: APLC (Asia Pacific), RELESSER (Europe), FORWARD (North America), and Almenara and GLADEL (Central and South America). LupusNet uses a federated data network approach and a privacy-by-design method, where the data remains with the respective registries and analysis occurs at the local center, while only aggregated results are shared. Demographic and clinical variables (e.g., patient demographics, disease activity/severity, clinical events, biopsies/histology, SLE biomarkers, treatment history, comorbidities, comedication, and patient-reported outcomes) were mapped and harmonized to the Observational Medical Outcomes Partnership (OMOP) Common Data Model v5.4. <h3>Results:</h3> A total of 10,212 patients with SLE from 5 registries were included and mapped in LupusNet; of those, 3,908 patients were in Asia Pacific, 1,802 in Europe, 3,070 in North America, and 1,432 in Central and South America. Mapped baseline demographic and chronologic characteristics of patients with SLE are presented (Table 1), and heterogeneity across regions was observed. Integration of different data sources using the OMOP CDM was used for the calculation of some measures, regardless of the specific SLE-related or general scale used to collect the information. <h3>Conclusion:</h3> Mapping patient characteristics from LupusNet allows researchers to analyze a larger population of patients with SLE across different geographical regions. This allows further study to better understand disease heterogeneity, patient populations, and treatment patterns with the goal of improving patient outcomes across the globe. <h3>REFERENCES:</h3> <b>NIL.</b> <h3>Acknowledgements:</h3> Medical writing support was provided by Panita Maturavongsadit, PhD, of Lumanity Communications Inc., and was funded by Janssen Global Services, LLC. <h3>Disclosure of Interests:</h3> Urbano Sbarigia Johnson &amp; Johnson Innovative Medicine, Federico Zazzetti Johnson &amp; Johnson Innovative Medicine , Martine Lewi Johnson &amp; Johnson Innovative Medicine , Michel van Speybroeck Johnson &amp; Johnson Innovative Medicine , Teresa A. Simon Physicians Research Center, LLC , Guo Li Johnson &amp; Johnson Innovative Medicine , Reyhan Sonmez EFOR-CVO Life Sciences Consultancy , Chureen Carter Johnson &amp; Johnson Innovative Medicine, Johnson &amp; Johnson Innovative Medicine, Chetan S Karyekar Johnson &amp; Johnson Innovative Medicine, Wim Noel Johnson &amp; Johnson Innovative Medicine, Manuel F. Ugarte-Gil Speaking fees: AstraZeneca, GlaxoSmithKline, Ferrer, Consulting fees: AstraZeneca, GlaxoSmithKline, Ferrer, Research Support: Janssen, Rocío V. Gamboa-Cardenas: None declared, Guillermo Pons-Estel Speaker and/or advisor and/or steering committee: AstraZeneca, Boehringer Ingelheim, GSK, Janssen, Novartis, Pfizer, RemeGen, Sanofi and Werfen Diagnostics, Consulting fees: AstraZeneca, Boehringer Ingelheim, GSK, Janssen, Novartis, Pfizer, RemeGen, Sanofi and Werfen Diagnostics, Grants: AstraZeneca, Boehringer Ingelheim, GSK, Janssen, Novartis, Pfizer, RemeGen, Sanofi and Werfen Diagnostics, Eduardo F. Borba: None declared, Loreto Massardo: None declared, Gustavo Aroca Martínez: None declared, Roberto Muñoz Louis: None declared, Mario Moreno Alvarez: None declared, Ignacio García De La Torre: None declared, Isabel Acosta Colmán: None declared, Claudia Mora Trujillo: None declared, Álvaro Danza: None declared, Kaleb Michaud: None declared, Patricia Katz: None declared, Rangi Kandane-Rathnayake Research grants: GSK, Novartis (both institutional), Eric Morand: None declared, Worawit Louthrenoo: None declared, Yi-Hsing Chen: None declared, Jiacai Cho: None declared, Laniyati Hamijoyo: None declared, Shue-Fen Luo: None declared, Yeong-Jian Jan Wu: None declared, Sandra Navarra Speakers' bureau: Biogen, AstraZeneca, Idorsia, Astellas, Aurinia, Consultancies: Biogen, AstraZeneca, Idorsia, Astellas, Aurinia, Zhanguo Li: None declared, Sargunan Sockalingam: None declared, Masayoshi Harigai: None declared, Zhuoli Zhang: None declared, Duminda Basnayake: None declared, Madelynn Chan: None declared, Tsutomu Takeuchi Speaker/Honoraria: AbbVie, Chugai, Eli Lilly Japan, Mitsubishi-Tanabe, Consulting fees: AbbVie, Astellas, Chugai, Eli Lilly Japan, Mitsubishi-Tanabe, Grant: AbbVie, Chugai, Mitsubishi-Tanabe, Sang-Cheol Bae: None declared, Fiona Goldblatt Secretary of the Australian Rheumatology Association, Sean O'Neill: None declared, Kristine Pek Ling Ng: None declared, Nicola Tugnet: None declared, Sunil Kumar: None declared, Michael Tee: None declared, Yoshiya Tanaka Speaking fees and/or honoraria: Eli Lilly, AstraZeneca, Abbvie, Gilead, Chugai, Behringer-Ingelheim, GlaxoSmithKline, Eisai, Taisho, Bristol-Myers, Pfizer, Taiho, Research grants: Mitsubishi-Tanabe, Eisai, Chugai, Taisho, Chak Sing Lau: None declared, Alberta Hoi Grants: Arthritis Australia, AstraZeneca, Perpetual IMPACT fund, BMS, Merck Serono, GSK, Eli Lilly, UCB, Janssen, Mandana Nikpour Research Grant Support: Janssen, Boehringer Ingelheim. Honoraria: AzstraZeneca, Boehringer Ingelheim, GSK, Janssen , Íñigo Rúa-Figueroa: None declared, José M. Pego-Reigosa Sspeaker fees and Advisory Board participation: GSK, Otsuka, Gebro, AstraZeneca, Boehringer-Ingelheim, MSD and received investigation grants by GSK and Pfizer , María Galindo-Izquierdo: None declared, Jaime Calvo Alén: None declared, Antonio Fernández-Nebro Consultancies and conferences: Galapagos, GSK, Astra-Zeneca, Lilly, Novartis and Gebro Pharma., Clinical trials and research projects: Astra-Zeneca, MSD, Galapagos, Janssen, Novartis, Chemo, Argenx, Takeda, UCB, Merk Serono, Raúl Menor-Almagro: None declared, Frédéric Lavie Johnson &amp; Johnson Innovative Medicine.