Lehnerer, Sophie https://orcid.org/0000-0001-9007-027X
Uccheddu, Maria Bonaria https://orcid.org/0009-0007-8188-8310
Sufragiu, Diana
Carpenter, Charlotte
Bridge, Daisy
Stone, Medi
Chassat, Camille
Jha, Anouska
Rodrigues, Gonçalo M.C.
Mangelaars, Maartje
Noel, Wim
Gary, Charlotte
Saccà, Francesco https://orcid.org/0000-0002-1323-6317
Funding for this research was provided by:
Johnson & Johnson
Article History
Received: 4 February 2026
Accepted: 17 June 2026
First Online: 22 August 2026
Declarations
Ethical approval and consent to participate: This study elicited opinions from European patients with gMG experiencing remaining symptoms despite treatment; this was conducted as qualitative research without any clinical interventions, experiments, or biological sample collection. All questions were hypothetical in nature, and no physical, financial, or other risks were posed to participants. Data collection was fully anonymous, with no personal identifiable information recorded, limiting collected information to the minimum needed to ensure real world representation. The study investigator and sponsor were blinded to participant identities throughout the study. Participants provided informed consent at each study stage. Since these research activities fall outside the scope of research ethics committee governance according to British Healthcare Business Intelligence Association (BHBIA) and European Pharmaceutical Market Research Association (EphMRA) regulations, formal ethical approval was not required. Nevertheless, the study adhered to ethical principles originating from the Declaration of Helsinki, remained consistent with Good Pharmacoepidemiology Practices and applicable EU regulations, and maintained full compliance with General Data Protection Regulation (GDPR) requirements. Internal compliance officers ensured adherence to local regulations throughout the study.Prior to each study phase, all patients provided informed consent to participate and be included in the study. All quotes presented are from participants who consented to the use of their anonymised quotes being used in future scientific publications, non-promotional communications with HCPs, patients and carers or social media posts.
Consent for publication: All authors agreed to the submission of this manuscript to BMC Neurology for publication.
Competing interests: This study was sponsored by Johnson & Johnson. FS, SL, MBU, DS and CCa received honoraria for consulting services from Johnson & Johnson. SL received travel/accommodation/meeting expenses from Alexion Astra Zeneca Rare Disease, Argenx, Johnson & Johnson, and UCB; she received speaking honoraria and honoraria for attendance at advisory boards from Alexion Astra Zeneca Rare Disease, Argenx, Biogen, Hormosan, Huma, Johnson & Johnson, Merck, Roche, StreamedUp and UCB. She received financial research support (paid to her institution) from Ad Scientiam, Alexion Pharmaceuticals, Argenx, Hormosan and UCB. S.L. is shareholder of RareLink digital health GmbH and mamahealth GmbH. MBU has received honoraria for consulting services from Alexion, Johnson & Johnson, Merck, and UCB, and speaking fees from Alexion and UCB. She also provided consulting services to Argenx. Travel expenses for congresses were paid by Alexion, UCB, and Argenx. CCa is an employee of Myaware. GR, MM, WN, CG are employees of the sponsor company, Johnson & Johnson, and may hold stock options in Johnson & Johnson. DB, MS, CCh and AJ are employees of Adelphi Values PROVE. Adelphi Values PROVE received funding from Johnson & Johnson for the conduct of the study and for manuscript development.