Myasthaenia Gravis, Myasthenia, Myasthenia Gravis, Myasthenia Gravis, Adult Form, Myasthenia Gravis Associated with Thymoma, Myasthenia Gravis Crisis, Myasthenia Gravis Exacerbations, Myasthenia Gravis Generalised, Myasthenia Gravis, Generalized, Myasthenia Gravis, MuSK, Myasthenia Gravis, Ocular, Myasthenia Gravis, Thymectomy, Myasthenia Gravis with Exacerbation (Disorder)
Conditions
Keywords
myasthenia, patient registry, MGFA, Myasthenia Gravis Foundation of America, myasthenia gravis
Brief summary
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.
Detailed description
This is a longitudinal, observational, patient reported registry.
Interventions
None listed
Sponsors
Alira Health
Myasthenia Gravis Foundation of America
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* age over 18 * positive MG diagnosis
Exclusion criteria
* age under 18 * misdiagnosed with MG
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Diagnosis of MG | At enrollment | Whether the patient has a confirmed MG diagnosis. |
Countries
United States
Contacts
Primary ContactNational Director, Patient Registry
Outcome results
None listed