Lupus & antiphospholipid syndrome
Demographic and clinical characteristics of patients with systemic lupus erythematosus across five registries: the LupusNet federated data network
Authors' conclusion
These findings demonstrate significant heterogeneity in clinical characteristics and treatment patterns across the registries in LupusNet.
Study context
- Population
- Patients with systemic lupus erythematosus (SLE) at registration in five LupusNet registries across four global regions
- Participants
- 10,370 patients5 registries
- Exposure
- APLC vs FORWARD vs RELESSER vs GLADEL 2.0 and Almenara
- APLCn = 3,908
- FORWARDn = 3,066
- RELESSERn = 1,806
- GLADEL 2.0 and Almenaran = 1,590
- Outcome
- Baseline demographics, clinical characteristics and treatments at registry entry
- Follow-up
- Registry entry
Methodological detailsmultinational registry data, federated data network, privacy-by-design (only aggregated results shared), harmonised to OMOP Common Data Model V.5.4
- Multinational registry data
- Federated data network
- Privacy-by-design (only aggregated results shared)
- Harmonised to OMOP Common Data Model V.5.4
Main finding
As reported in the abstract
Baseline characteristics across registries
- Female
- 91%
- Median (IQR) duration from SLE diagnosis to registry entry, range across registries
- 5 (1-12) to 12 (6-19) years
- Mean (SD) SLEDAI-2K total, range across registries
- 3.0 (4.1)-7.0 (7.4)
- Mean (SD) Physician Global Assessment (PGA), range across registries
- 0.4 (0.5)-1.2 (1.0)
- Serologic activity (low complement and increased DNA binding), most common features
- 19%-47%
- Proteinuria and arthritis
- 4%-37%
- Cataracts, most common damage characteristic
- 4%-9%
Observational data: associations, not effects.
Original publication
Demographic and clinical characteristics of patients with systemic lupus erythematosus across five registries: the LupusNet federated data network. Lupus Sci Med. Published 10 April 2026. doi:10.
Composed by AI from the published abstract and checked against it. How Briefs are made →