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MYaEX: Exercise in Autoimmune Myasthenia Gravis and Myasthenic Syndromes

Sponsor
Institut de Myologie, France (Other)
Overall Status
Completed
CT.gov ID
NCT05408702
Collaborator
Association Française contre les Myopathies (AFM), Paris (Other)
500
Enrollment
1
Location
6
Actual Duration (Months)
82.7
Patients Per Site Per Month

Study Details

Study Description

Brief Summary

A few recent observational studies show that despite the lack of clear recommendations, many individuals with myasthenia participate in exercise. However, no link has been found between exercise and the severity of myasthenia symptoms, measured by the Muscle Myasthenia Score or the Myasthenia Gravis Composite Score. This suggests that there are other factors that may limit or prevent some individuals from being active, or factors which may facilitate participation in exercise.

Studies in other diseases have shown that there are internal (beliefs, motivation, etc.) and external (cost, accessibility, etc.) factors unrelated to the disease which may play a role in exercise participation.

The aim of this study is to identify factors that facilitate or limit exercise in individuals with autoimmune myasthenia gravis, congenital myasthenia syndrome and Lambert-Eaton syndrome.

Condition or Disease Intervention/Treatment Phase

    Study Design

    Study Type:
    Observational
    Actual Enrollment :
    500 participants
    Observational Model:
    Cohort
    Time Perspective:
    Prospective
    Official Title:
    Barriers and Facilitators to Exercise for Individuals With Autoimmune Myasthenia Gravis, Congenital Myasthenic Syndrome or Lambert-Eaton Myasthenic Syndrome in France: a Descriptive, Cross-sectional Study
    Actual Study Start Date :
    Nov 12, 2021
    Actual Primary Completion Date :
    May 15, 2022
    Actual Study Completion Date :
    May 15, 2022

    Arms and Interventions

    Arm Intervention/Treatment
    Autoimmune Myasthenia Gravis
    Congenital Myasthenic Syndrome
    Lambert Eaton Syndrome

    Outcome Measures

    Primary Outcome Measures

    1. Barriers and facilitators to exercise [Six months]

    Eligibility Criteria

    Criteria

    Ages Eligible for Study:
    18 Years and Older
    Sexes Eligible for Study:
    All
    Accepts Healthy Volunteers:
    No
    Inclusion Criteria:

    • at least 18 years old

    • confirmed diagnosis of MG or SMC or LEMS

    • Live in France or its territories

    • Provide consent

    Exclusion Criteria:

    Contacts and Locations

    Locations

    Site City State Country Postal Code
    1 Online Questionnaire Paris France

    Sponsors and Collaborators

    • Institut de Myologie, France
    • Association Française contre les Myopathies (AFM), Paris

    Investigators

    None specified.

    Study Documents (Full-Text)

    None provided.

    More Information

    Publications

    None provided.
    Responsible Party:
    Simone BIRNBAUM, Principal Investigator, Institut de Myologie, France
    ClinicalTrials.gov Identifier:
    NCT05408702
    Other Study ID Numbers:
    • MYaEX
    First Posted:
    Jun 7, 2022
    Last Update Posted:
    Jun 7, 2022
    Last Verified:
    Jun 1, 2022
    Individual Participant Data (IPD) Sharing Statement:
    Undecided
    Plan to Share IPD:
    Undecided
    Studies a U.S. FDA-regulated Drug Product:
    No
    Studies a U.S. FDA-regulated Device Product:
    No
    Additional relevant MeSH terms:
    Myasthenia Gravis
    Lambert-Eaton Myasthenic Syndrome
    Muscle Weakness
    Myasthenic Syndromes, Congenital
    Syndrome

    Study Results

    No Results Posted as of Jun 7, 2022