New US patient registry to track MG using real-world data

A new U.S.-based patient registry is enrolling people with myasthenia gravis (MG) to help researchers better understand how the disease progresses, how treatments are used in the real world, and how MG affects patients’ daily lives.

Launched by Alira Health in partnership with the Autoimmune Neurology Alliance, the AXIS Registry will collect patient-centered information for 10 years through surveys and digital health tools. The aim is to provide a broader view of life with MG than doctors can capture in routine office visits.

“There is still so much variability in how [MG] affects individuals and how people respond to treatment,” Glenda Thomas, architect of the MG Alliance and a member of the registry’s patient committee, said in an Alira Health press release. “A registry designed with patient input from the ground level, using tools built on patient experience, offers a way for those real-world experiences to power important research in this debilitating disease.”

Thomas also lives with MG. “As a patient and rare disease advocate, it is important to me to support initiatives that prioritize patient participation in developing resources for the rare disease community,” she said.

The registry is starting with a focus on MG, but expects to expand to additional autoimmune neurological conditions, including neuromyelitis optica spectrum disorder and chronic inflammatory demyelinating polyneuropathy.

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‘Every story matters’

The registry website frames participation in personal terms, telling visitors that “every story matters.” It describes the registry as “a place where patients, families, and researchers come together to learn, share, and build a brighter future for everyone affected by autoimmune diseases of the nervous system, including Myasthenia Gravis.”

By integrating clinical information with patient-reported experiences over time in a single platform, the registry aims to provide clinicians and researchers with a deeper understanding of the different disease manifestations, treatment patterns, and the real-world impact of targeted therapies.

“While there has been important progress in autoimmune neurological diseases, continued advancement depends on deeper insight into real-world patient experience and outcomes,” said Gabriele Brambilla, CEO of Alira Health. “The AXIS Registry reflects our commitment to ensuring that the right data is available to answer complex questions and support more informed decision-making for patients and the broader healthcare community.”

The registry is supported by Yale University and guided by an independent scientific committee of autoimmune neurology experts.

“Progress in autoimmune neurology depends on connecting what we see in clinical practice with what patients experience day to day,” said Richard Nowak, MD, associate professor of neurology at Yale and chair of the registry’s scientific committee. “Initiatives that systematically capture those insights can play an important role in informing how the autoimmune neurology community navigates an increasingly complex therapeutic landscape.”

During enrollment, participants will be asked to confirm their diagnosis by providing a photo or PDF of a medical record or prescription to help ensure the data is accurate and valuable. Participation includes short questionnaires that take five to ten minutes to complete each week.

Participants with verified medical records may be eligible for compensation, including $100 for completing the enrollment survey, $10 for completing each monthly follow-up questionnaire, and entry into a monthly raffle. People can join the registry via the web platform or mobile app.

The registry may also help connect participants with future research. Researchers will be able to use de-identified data and may also pre-screen and contact patients for recruitment into studies, including clinical trials.