RECRUITING

Myasthenia Gravis Foundation of America Global MG Patient Registry

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

Myasthenia Gravis Foundation of America Global MG Patient Registry

Quick Facts

Study Start:2013-10-12
Study Completion:2029-09-19
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT06617741

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.

Ages Eligible for Study:18 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * age over 18
  2. * positive MG diagnosis
  1. * age under 18
  2. * misdiagnosed with MG

Contacts and Locations

Study Contact

National Director, Patient Registry
CONTACT
8005415454
gmvalo@myasthenia.org

Principal Investigator

Patient Registry PI
PRINCIPAL_INVESTIGATOR
Yale University

Study Locations (Sites)

Myasthenia Gravis Foundation of America
Westborough, Massachusetts, 01581
United States

Collaborators and Investigators

Sponsor: Myasthenia Gravis Foundation of America

  • Patient Registry PI, PRINCIPAL_INVESTIGATOR, 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 Registration Dates

Study Start Date2013-10-12
Study Completion Date2029-09-19

Study Record Updates

Study Start Date2013-10-12
Study Completion Date2029-09-19

Terms related to this study

Keywords Provided by Researchers

  • myasthenia
  • patient registry
  • MGFA
  • Myasthenia Gravis Foundation of America
  • myasthenia gravis

Additional Relevant MeSH Terms

  • 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