Do you have a myasthenic syndrome?
(Myasthenia Gravis, Lambert Eaton Syndrome or Congenital Myasthenic Syndrome)?
The impact of the Coronavirus disease (COVID-19) pandemic on myasthenia gravis patients in an Australian population: a nation-wide observational study
Your experience of the pandemic is critical to help your doctors and the public understand the impact of the pandemic on your wellbeing.
To complete a short survey (takes under 15 minutes) begin here:
https://redcap.alfredhealth.org.au/redcap/surveys/?s=WXWKWDM4CMPAJH4N
Your participation is voluntary and all information will be de-identified. This is an opportunity to give us your voice, and we sincerely appreciate your valuable contribution towards representing your experiences. Clinicians treating patients with myasthenia are also kindly invited to participate through the same link.
Principal investigators: Dr. Katherine Buzzard & Dr. Pakeeran Siriratnam
Any questions? Please email: p.siriratnam@alfred.org.au
Participant information statement
The aim of this project is to explore the various impacts of the COVID-19 pandemic on Australian patients with Myasthenia Gravis, with a focus on myasthenia management (timing and choice of immunosuppression, timing of vaccinations and access to care), quality of life and mental health.
We hypothesise that the COVID-19 pandemic has had a negative impact on myasthenia management and quality of life of our patients. The survey is exclusively available through Myasthenia Alliance Australia (MAA) and invites all patients with myasthenia gravis in Australia to participate. The survey should take no more than 15 minutes of your valuable time. The survey is anonymous. The information will be collected via REDCap and stored in a password-protected Excel document.
The results of this survey will provide clinicians and the public with an increased understanding of how the COVID-19 pandemic has impacted patients with Myasthenia Gravis. The findings are not only important as we continue to live with the pandemic in its various stages but may also provide useful information for planning and managing future pandemics. Please only complete the survey once.
There is also a survey for Clinicians. ASK YOUR CLINICIAN TO PARTICIPATE.
FOR CLINICIANS The clinician’s survey should take under 10 minutes. Your unique position as treating clinicians of MG patients during the pandemic will provide great insights into the challenges both you and your patients have faced. The focus is on the impact of your management of myasthenia (timing and choice of immunosuppression, timing of vaccinations and access to care), and the mental health impact on your patients. You will only be asked to do the survey once.
If there are any questions, please address to Dr. Pakeeran Siriratnam via email p.siriratnam@alfred.org.au
Contact details for complaints: Complaints Officer, Office of Ethics & Research Governance, Alfred Health, email research@alfred.org.au, phone 03 90763619.