AXIS Autoimmune Neurology Registry

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.

The registry collects information directly from participants to support research on the natural history and real-world management of MG. At enrollment, participants provide information about their MG diagnosis, whether they have ocular or generalized MG, age at diagnosis, demographic characteristics, education, employment, other medical conditions, prior testing, and treatments they have used.

Participants are also asked about MG-related antibody testing, including acetylcholine receptor (AChR), muscle-specific kinase (MuSK), low-density lipoprotein receptor-related protein 4 (LRP4), agrin, and other antibody tests. The registry collects participant-reported information about chest imaging, thymus findings, and thymectomy when applicable.

Participants identify MG treatments they have used and treatments taken during the prior month. These may include symptomatic therapies, corticosteroids, other immunosuppressive therapies, biologic or targeted therapies, intravenous or subcutaneous immunoglobulin, and plasma exchange. Additional questions may collect information about current and prior prednisone doses.