Frequently Asked Questions

1. I didn’t know I had to complete questionnaires, do I need to register again?
No, you don’t need to register again. Just put the email address and the password that you used to register with, into the boxes at the top of the screen. (Forgotten your password?)
2. I have forgotten my password. Can you send me a new one?
Just press the ‘forgot password?’ button at the top of the screen and enter you email address into the box. You will be sent a new password with which you can log in with. Once logged back in, you can change your password to something that you will remember.
3. I click on "Forgot Password" but nothing works.
Have you clicked the ‘accept cookies’ button? Have a look at the bottom of the screen, if there is a black bar which asks you to ‘accept cookies’ then click on the accept box and try the ‘forgot details’ button again.
4. When I try to log in, it tells me "you already registered via mssociety.org.uk"
If above message appears then you came via the MS Society website the first time you registered. You will need to log back in this way each time you visit. www.mssociety.org.uk/user
5. How do I change my password?
Once you have logged in you can change your password by clicking the box ‘change password’ at the top right of the screen (next to the ‘sign out’ button)
6. I have done everything you have said but I still can’t sign back in.
Please get in touch with us at contact@ukmsregister.org and we will try to help you.

One last thing - Check to see if there is an obvious message on the screen which says ‘Javascript is disabled. If you can see this click, ‘enable’. (Java script is a scripting language that works with your browser to create interactive elements in web pages).
7. I have been given a ‘study number’ number by MS Nurse (on the bottom of my consent form) where do I enter this?
If you are treated at one of our pilot sites (Swansea, Nottingham, Belfast, St Marys (London), Edinburgh, Craigavon) then you can also give your consent for your records to be anonymously linked to the Register. For more details please contact contact@ukmsregister.org You can enter your study number by login in and clicking study id on the left side menu.
8. I don’t understand, what is all this about?
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.
9. Why are only some of the questionnaires showing as complete?
There are ten different questionnaires that are always on the website.

Three of the questionnaires remain open so that you are able to return to them as things change (symptoms, lifestyle or medication)

The other seven questionnaires should be completed at three month intervals.

So unless anything changes in your symptoms, lifestyle or medication, just put it in your calendar to return in every three months to complete the questionnaires again – the more long term data we have the more we can find out.
10. What are cookies?
Cookies are small pieces of data sent from a website and stored in a user’s web browser while a user is looking at a website. When the user comes back and looks at the website in the future, the data stored in the cookie can be retrieved by the website.
11. How do I send the questionnaires to you?
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’!
12. Why can’t I save the questionnaires and then come back to them another time?
If you don’t want to answer all of the questions now, you can click ‘save’ and come back with 24 hours to complete this section. The time to return is limited, because we want to understand how you are feeling right now. If you do not return within 24 hours, you will need to begin the questionnaire again when you do return. Once complete, a tick will appear next to the questionnaire in the list on the left.
13. Will we find out the results of this study?
We produce a quarterly newsletter which keeps you up to date with what is happening and what we are learning. You automatically receive this newsletter by email if you are part of the MS Register.
14. Will I receive a reminder to do the questionnaires?
Yes you will receive a reminder three months after you have completed all the questionnaires.
15. How do I leave the study?
If you are sure that you really must leave us, then log on to the website and then press the ‘Leave study’ button, five buttons down on the left hand side. Once you have left the study your personal information is removed from all of our databases. Your anonymous questionnaires are kept but all other information is deleted.
16. Why do I have to answer the same questionnaires every three months?
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.
17. What are these questionnaires about?
There are 10 questionnaires and they should take about 20 minutes in total to complete. We ask that people return every three months to complete them.

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.
  • 1) Your feelings – This is meant to reflect your mood right now. It is based on the ‘HADS scale’ and we ask this every 3 months so would expect it to change over time.
  • 2) Your day-to-day activities – How physically active you have been in the last two weeks (remember that you will be coming back to answer this in three months so it will provide us with a picture over time)
  • 3) Your overall quality of life – This is based on a questionnaire that is used by many other studies that determines your health status. This enables us to bench mark with other studies.
  • 4) Your lifestyle – Your employment status, your household makeup, and your original diagnosis of MS
  • 5) Your feedback – Feedback on how you are finding the Register to use.
  • 6) Your symptoms – Detail on your current symptoms and type of MS - this will probably not have changed from last time but it is important we know that too!
  • 7) Your medication – A log of ANY medications that you take (this can be changed any time)
  • 8) Your walking – Questions on your mobility, balance and gait
  • 9) Your other conditions – A questionnaire that lets you enter any other conditions that you might have
  • 10) Your Unique Experiences – A free text box which allows you to add anything else if you wish.
18. Hints and Tips for using the UK MS Register!?
  • Always make sure the ‘Accept Cookies’ button is clicked if it appears at the bottom of the screen.
  • Check to see if there is a Javascript message and if there is, click ‘enable’
  • Log on using your email and choose a password that you won’t forget.
  • Try to complete all the questionnaires in one sitting if you can – this makes it easier when you return again in three months! It takes under 20 minutes to complete them all in one go.
  • If anything changes in those three months in terms of your symptoms, lifestyle or medication then log back on and update the questionnaires that correspond.
  • You will get an email reminder to log back on after three months and again, if you can complete all the questionnaires in one go that will make things easier.
19. I want to see my answers!
You can see some of your answers in the results section underneath the list of questions. This shows your answers compared with the other participants also on the website.
20. How can I find out more?
Click on ‘News’ in the menu list on the left of the screen – this will take you to our blog which keeps you 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.