FAQ

Use these Frequently Asked Questions (FAQs) to see if you can find the answer to your question.

If you can't see an answer here, please contact us.

Caroline

Click here and enter your email address on the following page. You will be sent a link that will allow you to set a new password.
Once you have logged in you can change your password by clicking the ‘reset password’ link under "My Account", or if you are already logged in, click here.
If you're still having issues please get in touch with us and we will try to help you.
If you are treated at one of our partner sites then you can also give your consent for your records to be anonymously linked to the Register. For more details please contact us or speak with your clinician. You can enter your Study ID in the "Your Hospital" section on your profile.

The MS Register is a ground-breaking study designed to increase our understanding of living with MS in the UK.

By regularly returning to complete a series of questionnaires you will be directly involved in generating new research. The online survey is a collaboration between the UK MS Society and Swansea University, where a team of experts are working to collate and analyse data. For more information please contact us.
No, you don’t need to register again. Just go to the log in page and put in the email address and the password that you used to register with.

There are around seven regular questionnaires that we ask you to complete every six months. The rest of the information we collect remains open so you can update it as things change. We will ask you to check it once a year. You can do this by clicking on the highlighted relevant sections in the ‘Me at a Glance’ section.

We also host guest questionnaires from other researchers/organisations – we will let you know what these are about and when they are available.
When you press submit at the end of the questionnaire, the information is automatically sent to us, so all you have to do is answer and click ‘submit’!
In order to capture how you are feeling at the time of answering the questionnaires we are unable to provide a "save and continue at a later time" solution.
Yes, you will receive a reminder when it is time to come back and complete the questionnaires (six months for the regular ones and occasional extra ones in the interim). The questionnaires will remain open for one month.
Each of the questionnaires is based on a standardised questionnaire or ‘Validated Research Instrument’ that is used in many other studies to assess different study groups. We keep to the standardised research instruments so that we can compare the results from the Register Website to other studies and benchmarks.

Each of the questionnaires is based on a standardised questionnaire or ‘Validated Research Instrument’ that is used in many other studies to assess different study groups. We keep to the standardised research instruments so that we can compare the results from the Register Website to other studies and benchmarks.

Regular Questionnaires
  • Fatigue Severity Scale (FSS) - A measure of the severity of fatigue and its effect on your activities and lifestyle – Attempts to explore severity of any fatigue symptoms you are experiencing. It takes between 3-5 minutes.
  • Multiple Sclerosis Walking Scale – Used to assess the impact your MS has on your walking. It contains 12 questions that ask about the limitations on your walking due to your MS in the last two weeks and takes about 5-8 minutes.
  • EQ5D 3L – A general measure of your quality of life – This is one of the most commonly used generic health status measurements. It is not MS specific and so it can used to make comparisons with various other health conditions/chronic diseases. It should take around 3-5 minutes to complete and has 6 questions.
  • Hospital Anxiety and Depression Score (HADS) – This questionnaire is used in many research projects to generate a score of your level of anxiety or depression at the time of completion. It takes about 2-5 minutes to complete and contains 15 multiple choice questions.
  • Multiple Sclerosis Impact Scale (MISIS-29 V2) – Used to measure the impact that your MS is having on you, physically and psychologically at any given time. This questionnaire was designed specifically for MS. It means that researchers can measure how much your MS affects your quality of life. It is increasingly being used in MS Research and clinical settings. It takes about 5-8 minutes and has 29 questions.
  • Fatigue Severity Scale (FSS) – This questionnaire attempts to explore severity of any fatigue symptoms you are experiencing. It takes between 3-5 minutes and it contains 9 questions that ask you to rate whether you strongly agree or disagree with a statement.
  • Barthels Index of Daily Living – This is a general instrument used across research that looks specifically at your activities of daily living such as bathing, walking and toileting. It takes between 3-5 minutes to complete and contains 8 questions.
It could take anything from 20 minutes up to an hour every six months. It really depends on your answers and of course your computer skills. However the website is easy to use and the more you answer the quicker you will be. The occasional questionnaires that we host from external researchers will take between 5-20minutes to complete.

In your profile you can turn on "View My Results" which will make a button appear on your Hub page - My Feedback Report.

The feedback page will have charts to show how your questionnaire answers have changed over time. You can also download your results as a PDF to see and print off to show your doctor if you wish.

View results
View feedback
We produce newsletters which keep you up to date with what is happening and what we are learning. You can opt-in to receive newsletters through your preferences or visit our News Page to find out what's been going on.

If you are sure that you really want to leave, just let us know. You can leave by clicking here or by contacting us.

There are two options for leaving:

  1. You can allow researchers to continue to use the data you've provided where we will keep the information you have given us through our online questionnaires or clinical study, but delete your name and address so we will have no way of linking this information to you.
  2. Request that all information you have provided is deleted from our records*
*Any completed or on-going research before you leave will retain anonymised aggregate data
Visit our News Page to stay updated with what is happening with the Project. If you have a specific comment or question, please get in touch with us by emailing contact@ukmsregister.org or call 01792 606 354.

Couldn't find an answer?