MS-Selfie Survey - Smouldering MS Trial

This survey is for all people with MS regardless of whether or not you live in Finland or the UK. Imagine the study, or a similar study, taking place in your own country. The survey is to judge your enthusiasm to participate in the proposed trial to modify smouldering MS. We are particularly interested in what add-on components you would be willing to participate in and to help name the trial and proposed trial platform. The results from this survey will inform the trial design. Before completing this survey, you need to read the MS-Selfie Newsletter explaining the study design's rationale (Smouldering MS - a new trial, 17-Feb-2023) and an early MS-Selfie Newsletter explaining smouldering MS (Getting worse; 2-Jul-2021).

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How would you describe your understanding of the smouldering MS and the need for additional therapies to treat MS?
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Do you have smouldering MS?
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If you are unsure about having smouldering MS would you like to be assessed and told whether you have smouldering MS or not?
Smouldering MS can potentially be diagnosed over time with more sensitive outcome measures, for example, retinal imaging, brain volume assessments, neurological stress tests, etc. 
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Are you willing to participate in a trial targeting smouldering MS using PET and MRI imaging as an outcome?
Please note the trial will require 10 visits to the trial centre and a baseline and 12 month PET and MRI scan.
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We are proposing adding-on a weekly digital biomarker component to the study. Are you willing to use an application on your smartphone to complete a series of weekly tasks to participate in the trial?
The smartphone application has a suite of mini-apps to assess how MS affects you. The mini-apps are designed to assess gait, hand function, balance, coordination, cognition, mood, fatigue and quality of life. It takes about 15 minutes to complete all of the tasks. 
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We are proposing adding-on weekly urine samples during the trial. Are you willing to collect a urine sample weekly to participate in the trial?
The urine sample requires you to collect your own urine, freeze a small vial of it and store it in a special double layered container in your own freezer and to then bring the urine samples in at month 6 and month 12 for processing
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In the future, we are considering adding two lumbar punctures to the trial design; one at baseline and a second at month 12.  Are you willing to participate in a  trial that requires two lumbar punctures?
A lumbar puncture will allow investigators to examine biomarkers in the cerebrospinal fluid to see if the treatment is affecting specific processes linked to smouldering MS. Not all trials may require this, but this could be one way of getting an answer to a difficult question. Complications associated with lumbar punctures are much less common than they used to be because of the use of atraumatic or non-cutting needles. In some disease areas, regulators and the scientific community mandate that CSF biomarkers be assessed in early proof-of-concept studies because the information from spinal fluid analyses is essential to work out if the treatment has the desired effect or not. 
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How creative are you? Do you have any suggestions for what the trial and/or trial platform should be called? 

For example, a quick play with words generated the name PETITE-MS (PET Imaging Targeting smouldEring Multiple Sclerosis) trial platform. Petite is a play on small as the proposed trial design requires very few study subjects to complete the study.

Has your MS been treated with a disease-modifying therapy (DMT)?
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What DMTs have you been treated with or have had in the past?
If you have the time can you please list the DMTs in the order you received them, 
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