Myasthenia Gravis Foundation of America Global MG Patient Registry

NCT06617741 | Recruiting

• 1 other identifier: X130401004
• Study Type: observational
• Target: 3,800
• Locations: 1 country
• Sites: 1

Brief Summary

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

Keywords

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

Outcome Measures

Primary Outcomes (1)

• Diagnosis of MG

  Whether the patient has a confirmed MG diagnosis.

  At enrollment

Study Arms (1)

Participants

Those with Myasthenia Gravis

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• 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

You may qualify if:

• age over 18
• positive MG diagnosis

You may not qualify if:

• age under 18
• misdiagnosed with MG

Sponsors & Collaborators

• Myasthenia Gravis Foundation of America: lead
• Alira Health: collaborator

Study Sites (1)

Myasthenia Gravis Foundation of America

Westborough, Massachusetts, 01581, United States

RECRUITING

MeSH Terms

Conditions

Myasthenia Gravis

Condition Hierarchy (Ancestors)

Paraneoplastic Syndromes, Nervous System; Nervous System Neoplasms; Neoplasms by Site; Neoplasms; Paraneoplastic Syndromes; Autoimmune Diseases of the Nervous System; Nervous System Diseases; Neurodegenerative Diseases; Neuromuscular Junction Diseases; Neuromuscular Diseases; Autoimmune Diseases; Immune System Diseases

Study Officials

• Patient Registry PI

  Yale University

  PRINCIPAL INVESTIGATOR

Central Study Contacts

National Director, Patient Registry

CONTACT

8005415454; gmvalo@myasthenia.org

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Target Duration: 15 Years
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: September 26, 2024
• First Posted: September 27, 2024
• Study Start: October 12, 2013
• Primary Completion (Estimated): September 19, 2029
• Study Completion (Estimated): September 19, 2029
• Last Updated: September 27, 2024

Record last verified: 2024-09

Locations

US (1)