Myasthenia Gravis Foundation of America Global MG Patient Registry (MGFAPR)

September 26, 2024 updated by: Myasthenia Gravis Foundation of America

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.

Study Overview

Status

Recruiting

Conditions

Detailed Description

This is a longitudinal, observational, patient reported registry.

Study Type

Observational

Enrollment (Estimated)

3800

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Locations

  • United States
    • Massachusetts
      • Westborough, Massachusetts, United States, 01581
        • Recruiting
        • Myasthenia Gravis Foundation of America
        • Contact:

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Adult
  • Older Adult

Accepts Healthy Volunteers

No

Sampling Method

Non-Probability Sample

Study Population

Participants with access to a mobile device or desktop computer with internet connection are eligible to participate in this study

Description

Inclusion Criteria:

  • age over 18
  • positive MG diagnosis

Exclusion Criteria:

  • age under 18
  • misdiagnosed with MG

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Cohorts and Interventions

Group / Cohort
Participants
Those with Myasthenia Gravis

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Diagnosis of MG
Time Frame: At enrollment
Whether the patient has a confirmed MG diagnosis.
At enrollment

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Myasthenia Gravis Foundation of America

Collaborators

Alira Health

Investigators

  • Principal Investigator: Patient Registry PI, Yale University

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

October 12, 2013

Primary Completion (Estimated)

September 19, 2029

Study Completion (Estimated)

September 19, 2029

Study Registration Dates

First Submitted

September 26, 2024

First Submitted That Met QC Criteria

September 26, 2024

First Posted (Actual)

September 27, 2024

Study Record Updates

Last Update Posted (Actual)

September 27, 2024

Last Update Submitted That Met QC Criteria

September 26, 2024

Last Verified

September 1, 2024

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • X130401004

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

UNDECIDED

IPD Plan Description

Direct access to IPD is not widely shared. However, analysis of the data can be facilitated through collaboration with Alira Health.

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

product manufactured in and exported from the U.S.

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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