Myasthenia Gravis Foundation of America Global MG Patient Registry

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.

Recruiting

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Key information

Conditions

Myasthaenia Gravis Autoimmune Diseases Autoimmune Diseases of the Nervous System Immune System Diseases Myasthenia Myasthenia Gravis 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, MuSK Myasthenia Gravis, Ocular Myasthenia Gravis, Thymectomy Neoplasms Neoplasms by Site Nervous System Diseases Nervous System Neoplasms Neurodegenerative Diseases Neuromuscular Diseases Neuromuscular Junction Diseases Paraneoplastic Syndromes Paraneoplastic Syndromes, Nervous System

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Myasthenia Gravis Foundation of America

Westborough, Massachusetts, 01581, United States

Location status: Recruiting

Location contact

National Director, Patient Registry

CONTACT

[email protected]

800-541-5454

About this study

This is a longitudinal, observational, patient reported registry.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

age over 18
positive MG diagnosis

Exclusion criteria

age under 18
misdiagnosed with MG

Treatment and study plan

Primary outcomes

Diagnosis of MG

Time frame: At enrollment

Whether the patient has a confirmed MG diagnosis.

Study contacts

Contact information is provided by the study sponsor or research team.

National Director, Patient Registry

CONTACT

[email protected]

8005415454

Sponsors and collaborators

Lead sponsor

Myasthenia Gravis Foundation of America

Other

Collaborators

Alira Health

Registry information

Acronym: MGFAPR

Important dates

Study start: 2013
Primary completion: 2029
Study completion: 2029
First posted: Sep 27, 2024
Registry last updated: Sep 27, 2024

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Recruiting