Introduction to the survey

Section 1: Information about this survey

Dear 

What is this study about?

The European Network for Best Practice and Research in MS Rehabilitation (RIMS) has a Special Interest Group (SIG) for Mobility. The RIMS SIG mobility is undertaking a survey to investigate how the pandemic has affected physical activity (physiotherapy, exercise and/or leisure activities) for people with Multiple Sclerosis. The Principal Investigator (PI) of this study in the UK is Dr Marietta van der Linden.

What will taking part in the survey involve? 

The study will involve a survey on your experiences with physical activity participation (physiotherapy, exercise and/or leisure activities) both before the COVID pandemic and in current times. The study includes a mixture of both multiple choice questions and boxes for you to write answers in, and should take approximately 30 minutes to complete. There are 73 questions in total, but not everybody will need to answer all of these. You are also free not to answer some questions but the more information you provide, the better insight we gain.
 
Who has approved this study?  

This study has been reviewed and received ethical approval from the relevant institutional boards for in each country. For the UK this is the Queen Margaret University Research Ethics Committee. You may have a copy of this approval on request from the researcher.

Why have I been asked to take part? 

You have been asked because you have the diagnosis of Multiple Sclerosis and are aged 18 or over.

Do I have to take part? 

No, you are under no obligation whatsoever to take part in this research. It is entirely up to you to decide whether or not you would like to take part. If you decide to do so, you will be asked to complete an electronic anonymised consent form. If you decide to take part, you are still free to withdraw at any time without giving a reason. Deciding not to complete this survey will not affect the care you receive in any way.

What information will be collected?

Information on your age group, gender and disease duration and severity will be collected. This is followed by questions concerning your physical activity (physiotherapy, exercise and/or leisure activities) both prior to the COVID-19 pandemic and now.

Will my participation in the study be kept confidential?  

Yes, all information that is collected about you during the course of the research will be kept confidential and there are strict laws which safeguard your privacy.The surveys are designed in such a way that you cannot be identified from the data that you provide, and therefore is completely anonymous. Please remember not to add any information that might identify you or another person (for example names of people or places) when you are replying in comments boxes.

What will happen to the information which I give?

 All the information you provide will be inputted in a digital database. This database will be kept by the principal investigator of the study. Additionally, the UK database will be shared with the SIG mobility group of the RIMS network, in order to undergo analysis from all of the countries involved. The datasets will be kept for at least 10 but a maximum of 20 years after which they are destroyed.

What will happen to the results? 

Once we have analysed all the responses from all participants in the questionnaire we will create a summary report and disseminate the results through the Rehabilitation in MS network annual meeting, national or international conferences and will be published in scientific journals. A copy of the research findings in lay terms will be made available to you upon request from Dr van der Linden (contact details below).


What are the possible disadvantages of taking part? 

We do not envisage any disadvantages of taking part in this study.

What if I have any further questions? 

if you have any further questions please contact Marietta van der Linden, senior research fellow at Queen Margaret University, Edinburgh, UK. (mvanderlinden@qmu.ac.uk)

If you agree to take part in the study, please go to the next section. 
When filling in the survey, please do not disclose any information that can identify you.

Thank you for taking the time to read this.