Clinical trial · Observational
AXIS MG Patient Registry
AXIS Autoimmune Neurology Registry
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
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.
Conditions
Conditions (14)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| AChR-Ab Seropositive Generalized Myasthenia Gravis | — | UNRESOLVED | — |
| AChR Myasthenia Gravis | — | UNRESOLVED | — |
| MG | — | UNRESOLVED | — |
| MG - Myasthenia Gravis | — | UNRESOLVED | — |
| Myasthenia Gravis | — | UNRESOLVED | — |
| Myasthenia Gravis Associated With Thymoma | — | UNRESOLVED | — |
| Myasthenia Gravis Crisis | — | UNRESOLVED | — |
| Myasthenia Gravis Exacerbations | — | UNRESOLVED | — |
| Myasthenia Gravis Generalised | — | UNRESOLVED |
Interventions
Interventions (0)
Data not yet available
Design
Arms and outcomes
Arms (1)
- label
- Myasthenia Gravis (MG)
- description
- Adults with confirmed diagnosis of MG
Primary outcomes (1)
- measure
- MG-ADL
- timeFrame
- through study completion, up to 10 years
- description
- 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.
Secondary outcomes (2)
- measure
- MG-QOL15r
- timeFrame
- through study completion, up to 10 years
- description
- The revised 15-item Myasthenia Gravis Quality of Life (MG-QOL15r) questionnaire assesses how myasthenia gravis affected the participant's life during the previous 4 weeks. Participants rate 15 items covering physical functioning, social activities, work, family responsibilities, mobility, personal care, emotional well-being, and enjoyment of activities. Each item is scored from 0 to 2. Item scores are summed for a total score ranging from 0 to 30. A score of 0 indicates no reported effect on quality of life, and higher scores indicate a greater negative effect of myasthenia gravis on quality of life.
Eligibility
Eligibility (as posted)
- Sex
- All
- Minimum age
- 18 Years
Show eligibility criteria text
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
References
Publications (0)
Data not yet available