AXIS Autoimmune Neurology Registry
Autoimmune Neurology Alliance
Summary
The goal of the AXIS Autoimmune Neurology Registry is to learn about the experiences of adults living with autoimmune neurological disorders, starting with myasthenia gravis (MG), over time. The main questions the registry aims to answer are: * How do symptoms, daily functioning, and quality of life change over time? * What treatments do participants use, and how are these treatments related to their symptoms and health? * What challenges do participants experience with treatment, including side effects, treatment burden, missed doses, and access to care? Participants will: * Join the registry and complete an enrollment survey (online or through a mobile app) * Complete a brief online survey about their MG approximately once a month * Provide information that can help confirm their MG diagnosis * Optionally, share their medical records with the research team This is an observational study. The registry will not assign treatments or ask participants to change their medical care. Information collected through the registry may help researchers better understand MG and improve future research and care.
Description
The AXIS Autoimmune Neurology Registry is a prospective, longitudinal, observational registry of adults in the United States with autoimmune neurological disorders. The registry is beginning with myasthenia gravis (MG), and participants with MG are currently being enrolled. The registry may expand to include other autoimmune neurological disorders in the future. The registry is decentralized. Participants complete study activities remotely through a secure website or mobile application. The registry does not assign treatments and does not ask participants to change their usual medical care.…