About
SLE is a chronic autoimmune disease that affects multiple organ systems and significantly impacts patient-reported health-related quality of life (HRQoL). The clinical manifestations of SLE are heterogeneous, vary over time, and may include fatigue, pain, depression, sleep disturbance and cognitive dysfunction. The multisystemic nature of SLE poses a challenge for evaluating treatment benefit and underscores the importance of using a multidimensional approach when assessing HRQoL. In 1998, the Outcome Measures in Rheumatology (OMERACT) international consensus effort recommended five domains for assessment in all randomised controlled trials (RCTs) and longitudinal observational studies (LOS) in SLE, including disease activity, damage, HRQoL, adverse events and economic costs.
Current Stage in the OMERACT Process
After completing extensive scoping, survey, and focus group work, the SLE group is launching multilingual Delphi rounds. This will finalize their Core Domain Set for lupus research.
Latest Update
OMERACT 2025 Conference Highlights
Lightning Talk: In a rapid-fire session, our team shared an upcoming teaser of the Special Interest Group (SIG) session taking place during the conference.
Watch the lightning talk here
Closing Plenary Talk: We were also featured in the Closing Plenary, where we highlighted the activities of the (SIG).
Watch the presentation here
Looking Ahead
The group will launch round 1 of our Delphi survey, engaging patients, clinicians, and researchers in identifying the most important domains to measure in lupus research.
Meet the Team
Maya Desai, Canada
Patient Research Partner
Recent Publications
- Nielsen, Wils, et al. “Scoping Literature Review to Identify Candidate Domains for the OMERACT Systemic Lupus Erythematosus Core Outcome Set.” Seminars in Arthritis and Rheumatism, vol. 72, 152684, 2025, https://doi.org/10.1016/j.semarthrit.2025.152684.
- Nielsen, Wils, et al. “OMERACT 2023 Systemic Lupus Erythematosus Special Interest Group: Winnowing and Binning Preliminary Candidate Domains for the Core Outcome Set.” Seminars in Arthritis and Rheumatism, vol. 65, 152380, 2024, https://doi.org/10.1016/j.semarthrit.2024.152380.