NCT07761026 · Autoimmune Neurology Alliance
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)
What this study is about
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.
View original scientific description
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.
Primary outcome measures
MG-ADL
Time frame: through study completion, up to 10 years
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.
Who can participate
This study lists these criteria on ClinicalTrials.gov. A study coordinator reviews eligibility during screening — this page does not determine whether you qualify.
Inclusion criteria
- Physician-confirmed diagnosis of myasthenia gravis (MG)
- Willing and legally able to provide consent
- Lives in the United States
Exclusion criteria
- 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
Where
- Framingham, Massachusetts
Collaborators
Alira Health
Related conditions & keywords
Frequently asked questions
What is a clinical trial?
A clinical trial is a research study that tests new medical treatments, drugs, devices, or procedures to determine their safety and effectiveness. Trials are carefully designed and monitored to protect participants while advancing medical knowledge.
Is it safe to participate?
Clinical trials follow strict safety guidelines and ethical standards. Trials must be reviewed and approved, and participants are closely monitored by medical professionals throughout the study. You can withdraw at any time if you choose.
Will I be compensated?
Many clinical trials offer compensation for your time, travel expenses, and inconvenience. The specific compensation varies by study and will be discussed during the screening process. All study-related medical care is typically provided at no cost to participants.
Will I receive a placebo instead of treatment?
When effective treatment exists, participants typically receive either the standard treatment plus the study intervention, or the standard treatment plus placebo. You would not be denied effective care. Placebos are primarily used when no proven treatment is available, or in addition to standard care. Your trial consent form will clearly explain what treatments you may receive.
Can I leave a trial if I change my mind?
Absolutely. Participation in clinical trials is completely voluntary. You have the right to withdraw from the study at any time, for any reason, without penalty or loss of benefits to which you are otherwise entitled.
How long does a clinical trial last?
Trial duration varies widely depending on the study design and purpose. Some trials last just a few weeks, while others may continue for months or years. The study coordinator will provide specific timeline information during your screening call.
Data: ClinicalTrials.gov · synced Aug 17, 2026 · Source of record for eligibility and locations