Evaluating Dyspnea in Autoimmune Myasthenia Gravis "Why am I Short of Breath?"
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Myasthenia Gravis, Dyspnea. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- France
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Overview
Individuals with MG (IwMG) experience shortness of breath that may be activity-related, occur at rest and even happen during sleep. Dyspnea is a complex, multidimensional and multifactorial symptom involving sensory perception, cognition and emotion. Identifying the cause(s) of dyspnea in MG may assist in finding therapeutic strategies, reducing discomfort, improving QoL and potentially limiting respiratory deterioration and incidence of MG crisis.
Detailed description
MYaResp is a prospective observational, cross-sectional study to evaluate dyspnea in adults with autoimmune myasthenia gravis.
Study aims include to:
* Describe the characteristics of dyspnea in IwMG * Understand contributing factors and factors associated with dyspnea in IwMG including the relationship between patient-reported dyspnea, disease severity and functional limitations. * Determine the most effective tests to identify the causes and contributing factors of dyspnea
Primary outcome measures
- Dyspnea questionnaires [Time frame: baseline]
Secondary outcome measures (5)
- cardiopulmonary exercise test [Time frame: baseline]
- Polysomnography [Time frame: baseline]
- Functional measures [Time frame: baseline]
- Quality of life questionnaires [Time frame: baseline]
- Anxiety and depression [Time frame: baseline]
Eligibility criteria
Inclusion criteria
- Age ≥18
- Confirmed diagnosis of autoimmune MG
- Shortness of breath in daily life: score 1 or 2 on the respiration item on the MG- activities of daily living score
- Signed consent form
- Affiliated to or beneficiary of a social security scheme
Exclusion criteria
- Known Pregnancy
- Known respiratory disorder (other than MG)
- Recent (within past 4 weeks) respiratory infection
- Current MG crisis or exacerbation (necessitating increase in MG medication \&/or hospital admission)
- No dyspnea - score 0 or 3 on the respiration item on the MG- activities of daily living score
- Severe cognitive impairment/guardianship
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Cohort
Study locations
France · 1 center
- Institute of Myology — Paris
Identifiers
NCT: NCT06866652 · MyaRESP