What is the purpose of the CircaMS study?
Multiple sclerosis is a complex neuroimmune disease that impacts people across the globe. Here in Canada, we have one of the world’s highest rates of MS, but despite its prevalence, there is still a lot that we don’t know about this condition. We are interested in how our circadian rhythms (or, our 24-hour sleep-wake cycles) might play a role in the health of people with MS. Participate today to help us uncover new management and prevention strategies for MS!
Why should I participate, and how will this help me?
Participating in the CircaMS study will provide our team with valuable knowledge that will help guide future MS management practices. Additionally, by participating in our study, including completing our electronic diaries, you may learn more about your own experiences living with MS. Having a deep understanding of how your MS presents itself and may change throughout the day or the week can help you better manage and be aware your symptoms as well as assert yourself in healthcare settings.
How does the CircaMS study work?
This study is completed ONLINE and has two main parts.
- Firstly, you will complete the baseline questionnaire. This is where we will learn about you and your experiences with chronic pain.
- After you complete the baseline questionnaire, you will be sent a link to complete the electronic diary. This is a short survey that will be sent to you by email or text message to complete 3 times per day (at 8:00 AM, 2:00 PM, and 8:00 PM) for 10 days. This diary helps us understand how your pain may change or remain constant throughout the day and week.
How can I access the survey?
Please see the link on the homepage to enroll in the study! If you have any additional questions, see our “Contact US” page in the menu bar above.
Who is eligible to participate in the study?
Currently, the CircaMS study is examining the local Kingston, Ontario cohort! To be eligible, participants must be:
- 18 years or older
- Receiving treatment for MS at the Kingston Health Sciences Centre (KHSC)
- NOT travelling in 3 weeks following the study registration
- NOT diagnosed with narcolepsy
Can I participate if I haven’t experienced an episode of MS recently?
Yes! MS can be diagnosed as a clinically isolated syndrome, relapsing-remitting, primary progressive, or secondary progressive MS, each following specific timelines and severities that vary from person to person. Some people may experience frequent flare-ups or constant MS presentation, while others may not experience symptoms for extended periods of time. The only criterion is you must have had a formal diagnosis from a doctor.
What do I do if I miss a diary time point?
Don’t worry if you miss a time point! Just do the next one at the right time, and keep going!
Try to fill out the diary within one hour of receiving the email containing the survey link. Missing a couple of diary time points is fine, but unfortunately, if too many are missed, we will not be able to use your data. Setting phone alarms that will go off at 8:00 AM, 2:00 PM, and 8:00 PM every day (the times at which you will receive the emails) will help you remember to fill out the diary.
Will the confidentiality of my data be maintained/will my survey results be kept safe?
Absolutely! The CircaMS study uses a questionnaire platform called REDCap to collect responses, which is very secure and designed to protect health information. This is not only to protect your data but to help our team view and interpret your responses without any bias.
Where can I find the results of the CircaMS study?
Transparency and accessibility are very important to our team. We will be sharing our results as we collect and analyze them on the CircaMS Dashboard (coming SOON!) and Blog.
The results shared here will NOT contain any identifying information to protect the privacy of our participants. Links to any publications that arise from this project will also be cross-posted to our blog and our social media accounts (Facebook, Twitter, Instagram). Follow us to stay updated on our research!
I still have more questions about the CircaMS study! Who can I ask?
All contact information can be found on the “Contact Us” page, located in the top right corner of the webpage menu bar. Email our team at circams@ghasemloulab.ca with any questions, comments, or concerns that you have about our study!