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Article History

Received: 21 February 2025

Accepted: 7 April 2025

First Online: 15 May 2025

Declarations

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: Cornelia Reyes Acosta has nothing to disclose. At the time of the study, she was a Consultant for LLH Concepts GbR. Since manuscript development, she further holds a position in the Digital Health & Applied Tech Assessment research division at the Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London, London, UK. Ivo Vlaev has received consulting fees, research or institutional support and educational grants from AtomicPR, Barclays Bank, Boehringer Ingelheim, Ernst & Young, Kindred Agency, MC&T, McDonald’s, Ogilvy, Pfizer, Prime Global Medical Communications, Swiss Re Ltd. and UCB. He has received speaker fees from Teva UK Limited. Alexis Rodriguez has nothing to disclose. Allison Foss is part of the argenx Leadership Council. Ashwin Pinto has received funding for consultancy on scientific or educational advisory boards for argenx, Terumo BCT and UCB. Channa Hewamadduma has received funding for consultancy on scientific or educational advisory boards for argenx, Biogen, Lupin, Roche and UCB, and has received an investigator-led research grant from UCB. His study activities were supported by a Sheffield NIHR BRC UK centre grant. He is a Trustee of the myasthenia gravis patient organization Myaware. John Vissing has been a Consultant on advisory boards for Amicus Therapeutics, Biogen, Edgewise Therapeutics, Fulcrum Therapeutics, Genethon, Horizon Therapeutics (now Amgen), Lupin, ML Biopharma, Novartis, Regeneron Pharmaceuticals, Roche, Sanofi Genzyme (now Sanofi), Sarepta Therapeutics and UCB. He has received research and travel support and/or speaker honoraria from Alexion Pharmaceuticals, argenx, Biogen, Edgewise Therapeutics, Fulcrum Therapeutics, Lupin, Sanofi Genzyme (now Sanofi) and UCB. He is a Principal Investigator in clinical trials for Alexion Pharmaceuticals, argenx, Atamyo Therapeutics, Genethon, Horizon Therapeutics (now Amgen), Janssen Pharmaceuticals (now Johnson & Johnson Innovative Medicine), ML Biopharma, Novartis, Regeneron Pharmaceuticals, Roche, Sanofi Genzyme (now Sanofi) and UCB. Nicholas J. Silvestri is a Consultant/Adviser for Alexion Pharmaceuticals, Amgen, Annexon Biosciences, argenx, Immunovant, Janssen Pharmaceuticals (now Johnson & Johnson Innovative Medicine) and UCB; he is a Speaker for Alexion Pharmaceuticals, argenx, Takeda Pharmaceuticals and UCB. Sophie Lehnerer has received speaker or consultancy honoraria or financial research support (paid to her institution) from Alexion, argenx, Biogen, Hormosan, HUMA, Johnson & Johnson, Merck, Roche and UCB. Marc De Backer, Natasha Monin and Sophie Barry are employees and shareholders of UCB. Ina Weisshardt has received consulting fees from Heel, ILAE, ISHH, Janssen and UCB.

: Institutional Review Board approval for the overall ENGAGE program, including this needs assessment, was granted by the University of Warwick, UK (Ethical Application Reference: HSSREC 41/22-23). The needs assessment was carried out in accordance with the principles of the Declaration of Helsinki. Surveys were designed in accordance with both the Data Protection Act 2018 and the General Data Protection Regulation. Informed consent was captured from the participants prior to their participation in the interview, and survey data were captured anonymously, password protected and stored on a secure server. Interviews were conducted following consent from participants. Primary data were only available to essential members of the research team at LLH Concepts, unless explicit consent was received from the respective participant. Participants consented to the publication of their insights.