Rationale Myasthenia gravis (MG) is a rare, chronic neurological disorder leading to fluctuating muscle weakness and potentially life-threatening crises. Patients often require life-long specialized treatment, but timely interventions are frequently hindered by the limited availability of specialists. Telemedical solutions at specialized centers enabling patient-physician interaction hold promise in bridging this gap, but are not yet available for MG. We developed ‘MyaLink,’ a remote monitoring platform tailored for MG, and outline the study design assessing the platform and clinical outcomes regarding telemedical intervention. Additionally, we present study results on care-related aspects in MG prior to telemedical intervention to identify challenges in the current care provision process.

Design The platform comprises a patient app and a physician portal, enabling systematic symptom monitoring using data from patient-reported outcome measures (PROMs), coupled devices and a communication module. The randomized controlled study included 45 study participants (SP) over a 12-weeks period, including a group receiving standard care (15 MG patients) and a group with additional telemedical treatment (30 MG patients) including assessment of PROMs, wearable data collection and telemedical check-ups. Questions regarding care-related aspects were assessed at baseline visit.

Results Many SP (N=33, 73.3%) communicate with the physician managing their MG via email. 73.3% (N=33) of SP identify areas for improvement in their MG care including symptom monitoring (N=23, 69.7%), specialist appointment availability (N=22, 66.7%), medication (N=22, 66.7%) and specialist accessibility (N=20, 60.6%). Additionally, 73.3% (N=33) reported that the effort required to manage their MG was high.

Conclusion Our results emphasize the high demand of affected MG patients for continuous telemedicine services. MyaLink can provide such a service through personalized support based on the exchange of health data. Telemedicine solutions such as MyaLink promise to improve myasthenia care by providing accessible, patient-centred care that enables early detection of worsening symptoms and non-response to treatment.

Trial registration The study was registered under DRKS00029907 on August 19, 2022.

M.S. has received speakers honoraria and honoraria for attendance at advisory boards from Argenx and Alexion. A.M. received speakers honoraria from Alexion, Grifols and Hormosan and honoria from Argenx, Alexion, MorphoSys and UCB for consulting services and financial research support from Alexion and Octapharma. He is chairperson of the medical advisory board of the DMG. P.N. received grant support from PCORI, Alexion, Dianthus, and Janssen. P.N. serves as consultant/advisory board member for Alexion, Amgen, Argenx, CVS Caremark, Dianthus, GSK, Immune Abs, Janssen, Novartis, and UCB. P.N. serves as DSMB for Argenx, Sanofi. Royalties: Springer Nature. M.H. has received speakers honoraria from Argenx and speakers honoraria and honoraria for attendance at advisory boards from Alexion. S.L. has received speakers honoraria for the attendance at patient events and advisory boards from Argenx, Alexion, Biogen, Hormosan, Roche and UCB. All other authors have no conflict of interest to report.

DRKS00029907

Argenx, UCB and Hormosan provided a grant to support the study but were not involved in the design of the study. The project was partly funded and supported by the Berlin Institute for Health/Charite Universitaetsmedizin Berlin.

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