Myasthenia Gravis Foundation of America Global MG Patient Registry
Purpose
The goal of this observational study is to learn about the experiences of people living with Myasthenia Gravis (MG) in the United States. The main questions it aims to answer are: - How and when are people with MG diagnosed? - What are the most common symptoms associated with MG? - What treatments are being used to treat MG? - What are the impacts of MG on activities of daily living, employment and quality of life? - What are the experiences with exacerbation, hospitalization and healthcare access for people with MG? Participants will answer a survey to enroll in the study, and be invited to fill out an update survey twice a year.
Conditions
- Myasthaenia Gravis
- Myasthenia
- Myasthenia Gravis Associated with Thymoma
- Myasthenia Gravis Crisis
- Myasthenia Gravis Exacerbations
- Myasthenia Gravis Generalised
- Myasthenia Gravis with Exacerbation (Disorder)
- Myasthenia Gravis, Adult Form
- Myasthenia Gravis, Generalized
- Myasthenia Gravis, Ocular
- Myasthenia Gravis, Thymectomy
- Myasthenia Gravis
- Myasthenia Gravis, MuSK
Eligibility
- Eligible Ages
- Over 18 Years
- Eligible Sex
- All
- Accepts Healthy Volunteers
- No
Inclusion Criteria
- age over 18 - positive MG diagnosis
Exclusion Criteria
- age under 18 - misdiagnosed with MG
Study Design
- Phase
- Study Type
- Observational [Patient Registry]
- Observational Model
- Cohort
- Time Perspective
- Prospective
Arm Groups
| Arm | Description | Assigned Intervention |
|---|---|---|
| Participants | Those with Myasthenia Gravis |
Recruiting Locations
Myasthenia Gravis Foundation of America
Westborough, Massachusetts 01581
Westborough, Massachusetts 01581
More Details
- Status
- Recruiting
- Sponsor
- Myasthenia Gravis Foundation of America
Detailed Description
This is a longitudinal, observational, patient reported registry.