Registration Information

The MSReactor study is an innovative study aiming to develop the tools to monitor memory (cognitive) performance of people with multiple sclerosis (MS) around Australia and internationally. The initial phase of this exciting study is to collect cognitive performance data over time from both people with MS and people without MS. This is important as comparing the results between people with and without MS helps us to understand how accurate the test is.

Overview

Cognitive impairment occurs in up to 60% of people with MS, and this can impact on many areas of their lives including finding and maintaining employment, social involvement and daily activities such as bill paying and driving. Currently, the tools (tests) available to rapidly and easily measure cognition regularly over time are limited because the tests are often very long and are not able to be used repeatedly. Current tests also require trained staff to administer – this makes using it impractical and expensive. We therefore need to develop a better test to pick up early changes in memory function in people with MS. This is important because if we can detect memory changes early, we could potentially treat this with better medications or by using rehabilitation strategies.

Participation criteria

Participation in this study will require the following:

• You should read the information below about the study, and then decide whether you wish to participate, and if so, agree to the study conditions (which is the on-line equivalent to providing informed consent).
• You will be asked to fill out some basic questions on-line so we can work out whether you are eligible to participate in this study. We will also ask you to provide your name, date of birth, handedness (whether you are right-handed or left-handed), education in years, postcode and email address (your email address is required so we can send you confidential log on information for the testing website). These questions will take you about 5-10 minutes.
• If you are eligible, you will be sent an email with details of your study identifier ("study ID") and how to access the secure study testing site.
• If you are eligible, you will be sent an email with details of your study identifier ("study ID") and how to access the secure study testing site
• You will then be asked to login to the study site.
• The next step is to become familiar with MSReactor by doing a practice test. This is activated by clicking a link on the testing web page and is presented within a new window in your web browser. The practice test is very brief, lasting 2-3 minutes.
• Following this, you will be asked to do a scored test which takes at most 8-10 minutes. The scored test will be your initial baseline for future comparisons.
• You will also complete brief questionnaires covering your performance and mood, which will take and additional 1-2 minutes.
• You will be expected to do this testing yourself on a computer connected to the internet (so results can be sent immediately). Hence, you should feel comfortable with computers and using a web browser such as this one.
• You will be asked to repeat the same test once every 1-3 months if possible for the duration of the study. We understand that sometimes tests may be missed or delayed due to any number of reasons. But once you’ve established your baseline (first test), you can repeat the test at any time including if you miss a scheduled test.
• You will be able to see your results graphed in comparison to the results from your previous tests.
• Behind the scenes, there are analyses that will determine whether the study investigators need to get in touch with you to discuss the results. If your results are “stable” as defined by our previous experience with these tests, then you won’t necessarily be contacted except perhaps by email reminders for regular testing.

What if my performance is declining?

It is very unlikely that your test scores will deteriorate. However, if decline is detected, it’s important to understand what will happen next.

Decline may be in memory or other thinking abilities and it may be just in one type of ability or several. If decline is detected it will lead to a review of all your test results and a recommendation as to what to do next. Usually, you will be asked to repeat the testing under optimal conditions (ie after a good night’s sleep, without distractions, and when you think you are at your best). If this repeat test does not show a return to your prior performance levels, then you will be contacted by a study investigator and asked to consider further options for medical evaluation.

If decline is identified, you will be told of this and you can decide what to do next.

Do you want to learn more about participating and register?

If you are still interested in participating in the MSReactor study, and would like to continue the screening process (which has ethics information and consent form, eligibility questions, questionnaires and contact details pages) then please click the Continue button to go to the Plain Language Statement.