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Article History

Received: 18 April 2024

Accepted: 8 January 2025

First Online: 17 February 2025

Declarations

:

: Angela Ting is a former employee and shareholder of UCB. Mohita Kumar and Edward Lee are employees and shareholders of UCB. Minjee Park and Jean-François Ricci are employees of Alira Health. Oshin Sangha is a former employee of Alira Health and a member of the MGFA Registry Advisory Council. Richard J. Nowak reports research support from Alexion Pharmaceuticals, argenx, Annexon Biosciences, Genentech, Grifols, Immunovant, Momenta (now Johnson & Johnson), the MGFA, the National Institutes of Health, UCB, and Horizon Therapeutics (now Amgen). Richard J. Nowak has also served as a consultant and advisor for Alexion Pharmaceuticals, argenx, Cabaletta Bio, COUR Pharmaceuticals, CSL Behring, Grifols, Immunovant, Momenta (now Johnson & Johnson), UCB, and Horizon Therapeutics (now Amgen).

: MGFAPR is a patient-driven registry funded and supervised by the MGFA and managed by Alira Health since June 2022. The MGFAPR is approved by the WCG Institutional Review Board (IRB tracking number: 20223601), and the database is Health Insurance Portability and Accountability Act compliant. This study followed the 2005 Guidelines for Good Pharmacoepidemiological Practice (GPP) and the 2015 International Society of Pharmacoepidemiology Guidelines for GPP. All patients provided informed, voluntary consent to enroll in the MGFAPR and for their data to be used in research studies.