Lumberton Township

Researchers are collecting long-term observational data on adults with myasthenia gravis (MG) to understand the disease's treatment, symptoms, daily impact, and quality of life. This registry study will follow about 600 patients over 10 years in the US and Europe, linking patient-reported information with clinical data from medical records. The goal is to gain a comprehensive view of living with MG and how treatments affect patients over time. Patients treated at participating clinics in the US and UK will be invited to join, with additional recruitment through community neurologists and direct patient contact in the US. Participants will provide data through a digital platform accessible via smartphones, tablets, or computers. Clinical teams will update medical record information every six months, and patient surveys will be completed regularly for up to 10 years. Data from different sources will be linked using a unique ID and PIN assigned at enrollment. During the study, participants will complete custom surveys on their symptoms, fatigue, daily activities, and quality of life at baseline and regular intervals. Clinical teams will update electronic case report forms using information from patients' medical records. The study does not require additional clinic visits beyond regular care. The main outcome measure is the Vitaccess Real MG Registry data collected over the 10-year period, focusing on real-world patient and clinical insights into MG.