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 (MG), we Plan to Evaluate Expansion to Other Conditions Across Autoimmune Neurology.
AXIS
AXIS Autoimmune Neurology Registry
1 other identifier
observational
1,000
1 country
1
Brief 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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Mar 2026
Longer than P75 for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
March 19, 2026
CompletedFirst Submitted
Initial submission to the registry
August 4, 2026
CompletedFirst Posted
Study publicly available on registry
August 12, 2026
CompletedPrimary Completion
Last participant's last visit for primary outcome
March 1, 2036
ExpectedStudy Completion
Last participant's last visit for all outcomes
March 1, 2036
August 12, 2026
August 1, 2026
10 years
August 4, 2026
August 7, 2026
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
MG-ADL
The Myasthenia Gravis Activities of Daily Living (MG-ADL) profile assesses the severity of myasthenia gravis symptoms during the previous week. Participants rate 8 activities: talking, chewing, swallowing, breathing, brushing teeth or combing hair, rising from a chair, double vision, and eyelid droop. Each item is scored from 0 to 3. Item scores are summed for a total score ranging from 0 to 24. A score of 0 indicates no reported impairment, and higher scores indicate greater symptom severity and functional impairment.
through study completion, up to 10 years
Secondary Outcomes (2)
MG-QOL15r
through study completion, up to 10 years
MGFA Clinical Classification (patient-reported proxy)
through study completion, up to 10 years
Study Arms (1)
Myasthenia Gravis (MG)
Adults with confirmed diagnosis of MG
Eligibility Criteria
Adults in the United States with a healthcare provider diagnosis of myasthenia gravis will be recruited from the community. Participants may be identified through healthcare providers, patient advocacy and research organizations, existing patient communities or registries, digital and social media outreach, and direct communications. The registry is decentralized, so participants may enroll and complete study activities remotely from locations across the United States.
You may qualify if:
- Physician-confirmed diagnosis of myasthenia gravis (MG)
- Willing and legally able to provide consent
- Lives in the United States
You may not qualify if:
- Unwilling or unable to provide consent or comprehend and complete questionnaires
- Cognitively impaired adults/unable to comprehend or understand the consent or overall study information
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- Autoimmune Neurology Alliancelead
- Alira Healthcollaborator
Study Sites (1)
Alira Health - Virtual/Remote Site - Can Be Completed 100% Online - All US Residents Accepted
Framingham, Massachusetts, 01702, United States
Related Links
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- STUDY CHAIR
Richard J Nowak, MD, MS
Yale University
- STUDY DIRECTOR
Gary R Cutter, PhD
University of Alabama at Birmingham
- STUDY DIRECTOR
Neelam Goyal, MD
Stanford University
- STUDY DIRECTOR
Srikanth Muppidi, MD
Stanford University
- PRINCIPAL INVESTIGATOR
Jared R Adams, MD, PhD
Alira Health
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Target Duration
- 10 Years
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
August 4, 2026
First Posted
August 12, 2026
Study Start
March 19, 2026
Primary Completion (Estimated)
March 1, 2036
Study Completion (Estimated)
March 1, 2036
Last Updated
August 12, 2026
Record last verified: 2026-08
Data Sharing
- IPD Sharing
- Will share
- Shared Documents
- STUDY PROTOCOL, ICF
De-identified individual participant data may be made available to qualified researchers for approved research projects. Requests will be reviewed by the AXIS Registry Scientific Committee and/or other applicable scientific or governance bodies. Access will be subject to an approved research proposal, applicable data-use agreements, participant consent, privacy protections, and any legal, ethical, or contractual requirements. A data dictionary describing the shared variables will be provided with approved datasets. Direct identifiers will not be shared.