MK, IH, and JK report speakers honoraria by GSK. All other authors declare no competing interests. We thank all patients and physicians from the Lupus100.org initiative for their constant work on this information source. All authors contributed to the conception of the manuscript and reviewed and edited the article carefully. AR performed the masking of the responses, IH, TX, and MK performed the evaluation. JG was primarily responsible for the statistical analysis. The first draft of the manuscript was written by IH and MK and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript. All data relevant to the study are included in the article or uploaded as supplementary information. Data are available on reasonable request to the corresponding author. JG and MK contributed equally to this work and share last authorship.