Myasthenia Gravis Foundation of America Global MG Patient Registry

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

3800 participants

Study Classification

OBSERVATIONAL

Study Start Date

2013-10-12

Study Completion Date

2029-09-19

Brief Summary

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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

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This is a longitudinal, observational, patient reported registry.

Conditions

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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

Keywords

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myasthenia patient registry MGFA Myasthenia Gravis Foundation of America myasthenia gravis

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Participants

Those with Myasthenia Gravis

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

* age over 18
* positive MG diagnosis

Exclusion Criteria

* age under 18
* misdiagnosed with MG

Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Patient Registry PI

Role: PRINCIPAL_INVESTIGATOR

Yale University

Locations

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