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

ArmDescriptionAssigned Intervention
Participants Those with Myasthenia Gravis

Recruiting Locations

Myasthenia Gravis Foundation of America
Westborough, Massachusetts 01581
Contact:
National Director, Patient Registry
800-541-5454
mgfa@myasthenia.org

More Details

Status
Recruiting
Sponsor
Myasthenia Gravis Foundation of America

Study Contact

National Director, Patient Registry
8005415454
gmvalo@myasthenia.org

Detailed Description

This is a longitudinal, observational, patient reported registry.