New registry connects patients and researchers to accelerate understanding and improve care in autoimmune neurological diseases
FRAMINGHAM, Mass., April 15, 2026 (GLOBE NEWSWIRE) -- Alira Health, in partnership with the Autoimmune Neurology Alliance (AiNA), today announced the launch of the AXIS Registry, a new initiative designed to advance research and improve patient care in autoimmune neurological diseases, including myasthenia gravis (MG).
As targeted therapies reshape the treatment landscape of autoimmune neurology, patients, clinicians, and health care systems face increasing complexity in understanding disease progression, treatment selection, and real-world outcomes. The AXIS Registry addresses this challenge by generating longitudinal, patient-centered data that reflects how these diseases are experienced and managed in real-world settings.
The AXIS Registry brings together patients, clinicians, and researchers through a shared data platform to capture both patient-reported and clinical data over time. By integrating these perspectives, AXIS can generate deeper insights into disease heterogeneity, treatment patterns, and the real-world impact of emerging targeted therapies, supporting more informed decision-making across clinical care, research, and health care systems.
For researchers, the registry will provide access to high-quality, real-world data to inform study design and clinical understanding, while enabling more efficient patient identification and recruitment into prospective studies. For patients, it creates an opportunity to contribute directly to research, gain greater visibility into their condition, and access relevant research opportunities, including clinical trials.
"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."
"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 University and chair of the AXIS Registry 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."
"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" said Glenda Thomas, Architect of the MG Alliance and member of the AXIS Registry Patient Committee. "There is still so much variability in how this disease affects individuals and how people respond to treatment. 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."
Patients participate in the registry by completing questionnaires developed in consultation with patients, neurologists, and industry stakeholders. The data can inform future research and improve our understanding of autoimmune neurological diseases. Researchers will be able to use de-identified data in their research, as well as pre-screen and contact patients for recruitment into other prospective research studies, including clinical trials.
The AXIS Registry is a scalable platform that will expand to additional autoimmune neurological conditions in the future, such as inflammatory neuropathies, among others.
People with myasthenia gravis can join the AXIS Registry at www.axispatientregistry.com.
Learn more about the AXIS Registry here.
About Alira Health
Alira Health is a global healthcare consultancy redefining evidence generation through patient partnerships. By uniting strategic consulting, CRO services, and technology, the company supports life sciences organizations in accelerating development, improving access, and delivering measurable outcomes across the product lifecycle. To learn more about Alira Health, please visit alirahealth.com.
About Autoimmune Neurology Alliance (AiNA)
The Autoimmune Neurology Alliance is dedicated to driving meaningful change in rare autoimmune neurological disorders by leveraging resources and expertise to enable research. With a commitment to collaboration and patient centricity, we collaborate with patients, researchers, clinicians, and the life sciences industry to support impactful research that will improve the lives of patients with autoimmune neurological disease and their families. To learn more about the Autoimmune Neurology Alliance, please visit ainalliance.org.
Alira Health: Susan Irving - susan.irving@alirahealth.com
