AXIS
Autoimmune Neurology
Registry
Advancing Understanding.
Elevating Patient Voice.
Improving Care.
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, we plan to evaluate expansion to other conditions across autoimmune neurology, which may include:
CIDP (chronic inflammatory demyelinating polyneuropathy)
GBS (Guillain–Barré syndrome)
NMOSD (neuromyelitis optica spectrum disorder)
MOGAD (myelin oligodendrocyte glycoprotein antibody–associated disease)
These registries are designed to reveal shared disease mechanisms, treatment pathways, and patient experiences, producing insights that go beyond any single condition.
Developed by the Autoimmune Neurology Alliance in partnership with Alira Health, AXIS is part of a broader effort to transform how data is generated, analyzed, and applied across autoimmune neurology.
AXIS is more than a registry — it is a scalable research platform governed by a Scientific Advisory Committee and a Patient Governance Committee.
This governance model ensures scientific rigor, ethical oversight, and alignment with patient priorities.
Why is AiNA leading AXIS?
AXIS is the first step in a broader effort to build a connected evidence ecosystem across autoimmune neurology.
At AiNA, we believe that achieving our mission requires more than awareness, it requires better evidence, generated in partnership with patients and applied across the healthcare ecosystem.
The AXIS Registry reflects this commitment.
By leading AXIS, we are bringing fragmented data sets together by:
Creating infrastructure for longitudinal, patient-centered data generation
Ensuring that patient experience is captured alongside clinical outcomes
Enabling insights that can be applied across research, care delivery, and policy
By starting with myasthenia gravis and expanding to related conditions, we aim to:
Identify shared patterns across diseases
Accelerate learning across therapeutic areas
Support more coordinated and effective care
This is how AiNA fulfills its vision. Not just advancing knowledge, but enabling better decisions, faster progress, and improved outcomes for patients.
Why does AXIS matter?
The treatment landscape for myasthenia gravis is evolving rapidly, with new targeted therapies offering meaningful advances for patients.
With this progress comes new complexity:
How are treatments being used in the real world?
What outcomes matter most to patients?
How do symptoms fluctuate over time?
What factors influence treatment decisions and quality of life?
Traditional data sources often fall short. Many lack:
Confirmed diagnoses
Longitudinal follow-up
Representation of patient experience
The ability to distinguish subtypes such as ocular MG
AXIS was built to address these gaps.
What makes AXIS different?
The treatment landscape for myasthenia gravis is evolving rapidly, with new targeted therapies offering meaningful advances for patients.
Diagnosis-Confirmed Enrollment
Participants self-enroll and provide verification of their MG diagnosis, ensuring a reliable dataset from the start.
Patient-Centered Design
Optional modules, co-developed with patients and advocacy partners, capture:
Real-world treatment decision-making
Daily lived experience
Outcomes that matter most to patients
Integrated Data Ecosystem
The registry is designed to support linkage with:
Clinician-reported data
Administrative claims data
Monthly, Longitudinal Data Capture
Participants complete digital questionnaires each month, enabling continuous insight into:
Symptom variability
Treatment use and changes
Quality of life
Validated instruments include:
MG-ADL (Myasthenia Gravis Activities of Daily Living)
MG-QOL-15r (Myasthenia Gravis Quality of Life)
Built for Retention
Participants receive stipends and ongoing engagement to support sustained participation and high-quality longitudinal data
Contact us
Interested in working together or learning more about our initiatives in autoimmune neurology? Let us know more about yourself and we will be in touch.
We would welcome hearing from and partnering with patients, patient groups, researchers, neurologists, life science companies, and non-profits.