A short how-to guide for the UK MS Register questionnaires:
Participant Questionnaire User Guide
We ask our regular questionnaires twice a year, normally in the spring and autumn. If you have joined the Register then you are clearly interested in supporting research into MS. To have the best possible data available for researchers, we need everyone on the Register to complete their questionnaires in as much detail as they can.
Here is a handy step-by-step guide to logging in and accessing your questionnaires:
- Search ‘UK MS Register’ or type ukmsregister.org into your browser. You will land on the Register’s homepage.
- From here please click the ‘Log In’ button, located in the top right hand corner of the screen. You should now see a screen asking you for your email and password. Please fill these in and click ‘Log In’. Don’t worry if you have forgotten your password – this can easily be reset by clicking the ‘forgot your password?’ link located underneath the ‘Log In’ button.
- Once you successfully log into your account, you will see a white box on the right hand side of the screen titled ‘Questionnaires to do now’. In this box will be all the questionnaires which are available for you to answer, as well as a reminder to ‘Check your details’. Please regularly check to make sure your details and contact information is up to date.
- If at any point you are stuck and need some help you can always visit the FAQ pages here or email contact@ukmsregister.org and speak to a member of our friendly team.
What are each of the questionnaires for?
Hospital Anxiety & Depression Scale (HADS)
This questionnaire or scale, as you would expect, helps us to identify feelings of anxiety and depression in people with MS. These are among some of the most common symptoms people with MS experience. Understanding the emotional challenges of MS can help researchers develop more targeted support.
MS Impact Scale
The MSIS-29 focuses on how MS affects a person’s day to day life. It is made up of twenty physical questions and nine psychological ones. This information helps researchers to understand the specific challenges faced by people with MS, and how these challenges can change over time along with treatment and lifestyle alterations.
The Multiple Sclerosis Walking Scale
The MSWS is made up of twelve questions specifically designed to track how well people with MS can walk. There is a starter question to establish whether the person answering is able to walk at all.
EQ5D
The Euroqol5D focuses on quality of life. It aims to measure how MS impacts a person’s overall wellbeing. Researchers hope this information will help them develop ways to improve quality of life for people with MS. It allows them to apply costings to the responses given. This questionnaire is used in multiple studies and can be used to compare MS with other conditions such as cardiac or cancers.
Fatigue Severity Scale
The FSS measures the severity of fatigue that people with MS are experiencing. Fatigue is one of the most frequently reported symptoms that we record on the Register. The information you share through the FSS helps researchers understand the impact of fatigue on people’s lives and hopefully develop strategies to manage it. We are also able to study how fatigue is affected by all the other questionnaires and components which we ask on the Register.
These measures are essential tools within MS research and we have used them to publish extensively from your data. We know for sure that everyone’s experience with MS is different and unique to them, so we appreciate that not all of these questionnaires will feel relevant all of the time. However, by answering them all as honestly as possibly you are helping us gain a deeper understanding of MS and how it affects people in the UK. We hope this leads to more effective treatments and support services being developed in future. You can view a list of publications using Register data here: https://blog.msregister.org/?filter_category=publications
Thank you for taking the time to read this, and also for supporting the MS Register. If you need any assistance with logging in or answering your questionnaires please don’t hesitate to contact our team: contact@ukmsregister.org
