Lumberton Township

Researchers are observing adults diagnosed with myasthenia gravis MG to collect long-term data on how the disease affects their symptoms, daily activities, and quality of life. This observational patient registry spans 10 years and involves about 600 participants from the US and Europe. It aims to link patient-reported information with clinical data from medical records to better understand MG and its treatments. Participants will provide data through a digital platform accessible via phones, tablets, or computers. The study collects patient surveys and outcomes at the start and regularly over the 10-year period. Clinical teams will update health records every six months within a one-month window. In the US, additional recruitment is done through community neurologists and direct contact with patients from a previous MG study. All data are connected by unique IDs to maintain consistency. Participants will engage in regular follow-ups involving surveys about fatigue, symptom severity, and quality of life. Clinical data updates occur every six months during routine visits, without extra clinic visits solely for the registry. Researchers will assess changes in medical history, treatments, symptoms, adverse events, and healthcare use. The extended follow-up ensures comprehensive monitoring of MGs impact over time.