RF has received consultancy fees from Pfizer and Janssen (unrelated to the VACOLUP study). MP has received consultancy fees from GSK and Pfizer (unrelated to the VACOLUP study). MFU-G reports grants from Janssen and Pfizer, and support for attending meetings and/or travel from Pfizer and Abbvie (unrelated to the VACOLUP study). LA has received consultancy fees from Pfizer and AstraZeneca (unrelated to the VACOLUP study). All other authors declare no competing interests. RF and LA verified all the data in the study. We wish to acknowledge the crucial role of the following patient associations: LupusEurope (@LupusEurope), Agrupación Lupus Chile (@Lupus_Chile), Lupus UK, Lupus France, AFL+, and Gruppo LES Italiano, in the dissemination of the survey. RF, LK, MD, and LA conceived the study. RF and LA curated the data. All authors did the investigation. RF, LK, MD, and LA devised the methodology. RF and LA wrote the original draft of the manuscript. All authors reviewed and edited the manuscript.