Document is current

Article History

Received: 28 November 2025

Accepted: 20 March 2026

First Online: 11 April 2026

Declarations

:

: Shiva Lauretta Birija, Joe Conyers, Hannah Connolly, and Gregor Gibson are employees of Adelphi Real World. DaeYoung Yu, Mami Kasahara-Kiritani, Bolam Lee, and I-Ching Tsai are employees of Johnson & Johnson group of companies and own Johnson & Johnson shares as part of employment remuneration. Yoon Ho Hong received research grants from the National Research Foundation of Korea, and received consultation fees from Biogen, Johnson & Johnson, Merck, and UCB.

: Using a checkbox, patients and caregivers provided informed consent to take part in the survey. Patient- and caregiver-reported questionnaires were completed independently from their neurologist and were returned in a sealed envelope, ensuring the responses were kept confidential from their neurologist. No identifiable protected health information was extracted during the course of the survey. Data were collected in such a way that patients and neurologists could not be identified directly, with data aggregated before being shared with the subscriber and for publication. Data collection was undertaken in line with European Pharmaceutical Marketing Research Association (EphMRA) guidelines [ ]. Exemption from ethics approval was sought and granted from Pearl IRB (study number AG9525). Each survey was performed in full accordance with relevant legislation at the time of data collection, including the US Health Insurance Portability and Accountability Act 1996 [ ], and Health Information Technology for Economic and Clinical Health Act legislation [ ] and the Helsinki Declaration of 1964 and subsequent revisions. All authors from Johnson & Johnson had permission to access the Adelphi Real World gMG DSP dataset through the subscription purchased by Johnson & Johnson. Other authors include employees of Adelphi Real World, the dataset owner. Data privacy regulations in South Korea meant that only retrospective DSP data could be collected. Prospective patient or caregiver self-reporting was therefore not conducted. No patient-reported data for Australia was presented due to no response. As a result of a lack of participation, there was no caregiver-reported data for Australia or Taiwan.