AXIS Autoimmune Neurology Registry A 10-Year Study to Understand Experiences of Adults with Myasthenia Gravis MG in the United States

What this Trial Is About

Researchers are studying the experiences of adults living with autoimmune neurological disorders, starting with myasthenia gravis MG, to understand how symptoms, daily functioning, and quality of life change over time. The study is an observational registry aiming to learn about treatments used by participants, treatment challenges, and how these relate to symptoms and health. This registry may expand in the future to include other autoimmune neurological disorders beyond MG. Participants with MG join the registry remotely through a secure website or mobile app. They complete an enrollment survey and monthly follow-up surveys about their MG symptoms, treatments, and quality of life. They may provide information to confirm their diagnosis, share medical records voluntarily, and report on antibody testing, treatments, and healthcare use. The study does not assign treatments or request changes to usual medical care. During participation, individuals complete standardized questionnaires measuring MG symptoms and quality of life over up to 10 years. Researchers also collect information on MG exacerbations and healthcare visits. Data quality is monitored through electronic checks and participant follow-up. The registry collects and stores data securely, with privacy protections and optional medical record verification. The study aims to support research on MGs natural history and improve future care by analyzing long-term participant-reported data.

The AXIS Registry is a 10-year Longitudinal Research Initiative That Captures the Real-world Experiences of People Living With Autoimmune Neurology Conditions. Launching in Myasthenia Gravis (MG), we Plan to Evaluate Expansion to Other Conditions Across Autoimmune Neurology.