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Article History

Received: 20 December 2023

Accepted: 17 December 2024

First Online: 24 December 2024

Declarations

:

: Research utilizing data from social media can present ethical challenges owing to the limited guidance on the participants’ consent and anonymity []. The data analyzed in this study were obtained from publicly available sources. Identities of the patient posts were appropriately anonymized while ensuring that the data answered specific research questions. To ensure personal data protection, a strict General Data Protection Regulation-compliant process was adopted. This study was exempt from ethical review because it examined retrospective publicly available data from a sizeable number of patients. The focused group discussions (FGDs) plan was submitted to a central IRB and was exempt from ethical review because the research involved only interview procedures. All participants provided written informed consent prior to their participation in the FGDs. The sessions were recorded, and anonymized transcripts were made available for analysis.

: Not applicable.

: PK, OG, VJ, TDA, ES, JP, and ET are employees of the healthcare business of Merck KGaA, Darmstadt, Germany or EMD Serono, Billerica, MA, USA. KL and JMB are employees of VivoSense, Newport Coast, CA, USA, who was contracted to perform some of the research associated with this manuscript. Joy B is the Director of Research at the Lupus Foundation of America and have nothing to disclose. LA has received consulting fees/honoraria from: Alexion, Alpine, Amgen, Astra-Zeneca, Abbvie, Biogen, BMS, Boehringer-Ingelheim, Cêmka, GSK, Grifols, Janssen, LFB, Lilly, Menarini France, Medac, the healthcare business of Merck KGaA, Darmstadt, Germany, Novartis, Pfizer, Roche-Chugaï, Sêmeia, UCB.