Cognitive Functioning in People With Myasthenia Graivs: Impact on Daily Life Activities, Work, Di… (NCT06718855) | Clinical Trial Compass
CompletedNot Applicable
Cognitive Functioning in People With Myasthenia Graivs: Impact on Daily Life Activities, Work, Disability and Quality of Life
Italy150 participantsStarted 2023-06-07
Plain-language summary
MYCOG primarily aims to estimate the prevalence of cognitive difficulties in patients with MG treated at Besta Institute. Secondary aims include: a) assess the degree to which cognitive difficulties are associated to work impairment, limitations in ADL, symptoms of anxiety and depression, fatigue, disability and QoL; b) assess whether patients with different MG types show different degrees of cognitive impairment; c) assess whether patients with different MG antibody profiles show different degrees of cognitive impairment; d) assess whether patients under different MG-specific pharmacological treatments show different degrees of cognitive impairment.
Who can participate
Age range
18 Years – 99 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion Criteria:
* Patients with MG,
* followed-up at Besta institute
* aged 18-99,
* able to understand Italian language;
Exclusion Criteria:
* psychiatric comorbidies of psychotic nature;
* do not accept to participate on a voluntary basis;
* patients who should be excluded based on physician's judgement;
* patients who live in a nursing home for aged or disabled persons;
* respiratory impairment (patients under mechanical ventilation)
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1This trial has already been completed — does that mean results or data from it might be available that could help us understand how myasthenia gravis affects thinking and daily life, and is that information relevant to my situation?
2The trial was measuring something called GEMS as its primary outcome — can you explain what GEMS measures and whether the findings give us any useful picture of how cognitive functioning impacts work or quality of life in people with myasthenia gravis?
3Since this study focused on cognitive functioning and daily life activities rather than a new treatment, does it suggest that cognitive symptoms are something we should be actively monitoring or addressing as part of my care plan?
4Given that this was an observational or non-interventional study rather than a treatment trial, are there any treatment trials for myasthenia gravis that are currently open and recruiting that might be worth considering alongside or after reviewing what this study found?
5If cognitive difficulties and impacts on work or disability are real concerns in myasthenia gravis based on studies like this one, are there specific assessments or referrals — like neuropsychology or occupational therapy — that would make sense for me to pursue?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
GEMS
Timeframe: 22 months
Trial details
NCT IDNCT06718855
SponsorFondazione I.R.C.C.S. Istituto Neurologico Carlo Besta