Remote Monitoring in Myasthenia Gravis: Exploring Symptom Variability

Myasthenia gravis (MG) is a rare, autoimmune disorder characterized by fluctuating muscle weakness and potential life-threatening crises. While continuous specialized care is essential, access barriers often delay timely interventions. To address this, we developed MyaLink, a telemedical platform for MG patients. This study evaluated whether frequently assessed clinical outcomes via MyaLink can capture symptom variability between clinical visits.

In this randomized, controlled, 12-week study, 45 MG patients received either standard care (control, N = 15) or standard care with additional telemedical treatment (intervention, N = 30) including assessment of patient-reported outcome measures, sensor-based data, and patient-physician messaging via a mobile application. Physicians performed telemedical check-ups (TCUs) via a web-based platform, adjusting treatment as needed.

In the intervention group, variability in clinical scores and sensor-derived data was observed, particularly among those who experienced MG-related hospitalizations or exacerbations (H&E subgroup). This subgroup showed larger MG-ADL score fluctuations (mean range: 5.8 vs. 2.6 points), sent more messages, had more steroid dose adjustments (40% vs. 0%), and more frequent TCU interventions (93.3% vs. 60%) than the Non-H&E subgroup.

Telemedical platforms in MG might detect early signs of worsening. High-risk patients (H&E subgroup) require increased medical support, which can be effectively addressed through MyaLink.

The study was registered under the German clinical trial registry (DRKS00029907).