Exercise in Autoimmune Myasthenia Gravis and Myasthenic Syndromes

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.

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Key information

Conditions

Autoimmune Myasthenia Gravis Autoimmune Diseases Autoimmune Diseases of the Nervous System Congenital Myasthenic Syndrome Congenital, Hereditary, and Neonatal Diseases and Abnormalities Genetic Diseases, Inborn Immune System Diseases Lambert-Eaton Myasthenic Syndrome Myasthenia Gravis Myasthenic Syndromes, Congenital 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

Online Questionnaire

Paris, France

Who can participate

Healthy volunteers accepted: No

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

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

Treatment and study plan

Primary outcomes

Barriers and facilitators to exercise

Time frame: Six months

Sponsors and collaborators

Lead sponsor

Institut de Myologie, France

Other

Collaborators

Association Française contre les Myopathies (AFM), Paris

Registry information

Official study 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

Acronym: MYaEX

Important dates

Study start: 2021
Primary completion: 2022
Study completion: 2022
First posted: Jun 7, 2022
Registry last updated: Jun 7, 2022

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