Exercise in Autoimmune Myasthenia Gravis and Myasthenic Syndromes

NCT05408702 | Completed

• 1 other identifier: MYaEX
• Study Type: observational
• Target: 500
• Locations: 1 country
• Sites: 1

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.

Conditions

Autoimmune Myasthenia Gravis; Lambert-Eaton Myasthenic Syndrome; Congenital Myasthenic Syndrome; Myasthenia Gravis

Outcome Measures

Primary Outcomes (1)

• Barriers and facilitators to exercise

  Six months

Study Arms (3)

Autoimmune Myasthenia Gravis

Congenital Myasthenic Syndrome

Lambert Eaton Syndrome

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

Adults living in France or its territories, with a confirmed diagnosis of MG or SMC or LEMS

You may qualify if:

• at least 18 years old
• confirmed diagnosis of MG or SMC or LEMS
• Live in France or its territories
• Provide consent

Sponsors & Collaborators

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

Study Sites (1)

Online Questionnaire

Paris, France

Location

MeSH Terms

Conditions

Lambert-Eaton Myasthenic Syndrome; Myasthenic Syndromes, Congenital; 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; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Principal Investigator

Study Record Dates

• First Submitted: May 31, 2022
• First Posted: June 7, 2022
• Study Start: November 12, 2021
• Primary Completion: May 15, 2022
• Study Completion: May 15, 2022
• Last Updated: June 7, 2022

Record last verified: 2022-06

Locations

FR (1)