From 9 May 2020 until 31 May 2020, Lupus Europe, the umbrella organisation federating European national lupus patient associations, conducted an on-line survey among people living with lupus in Europe, to better understand the reality of living with SLE, as viewed from a patient perspective. The questionnaire, built by members of Lupus Europe, contained a total of up to 33 questions (see online supplemental appendix 1). The original English-language questionnaire was translated by volunteers of national lupus member organisations, and verified back with on-line translation tools to identify possible areas of incorrect translation, which were then verified back with native speakers. In total, 20 different language versions were made available. The last translations (Romanian and Estonian) were only available for a week.

lupus-2020-000469supp001.pdf

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