About the MS Register
How many people in the UK are living with MS? How do the different types of MS affect different people? Are there regional differences in how people with MS receive treatment?
Currently, the answers to these fundamental questions are largely unknown. With an estimated 100,000 people living with MS in the UK, it’s time we increased our knowledge and understanding. MS Register researchers are working to find out more about MS and the impact it has on the lives of those it affects. To do this, we need your help.
Everyone is different, and everyone experiences MS in a different way. That’s why your story is so important to us.
By joining the community of people in the UK affected by MS and contributing to the MS Register, you will be directly involved in generating new research. The knowledge we gain from this study will fuel campaigns for fair, relevant policy and improved healthcare for people living with MS.
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. In addition to this online survey, a clinical study is taking place. The clinical study and online survey form the MS Register. You’ll find more details about the clinical study in the NHS Centre section below.
If you are over the age of 18 and living in the UK, with a confirmed diagnosis of Multiple Sclerosis made by a consultant neurologist, you are eligible to take part in this ground breaking study.
Once you’ve completed the registration form, you’ll find a simple multiple choice questionnaire to complete; this should only take around 10 minutes. The questionnaire is currently divided into eight short sections: Your Details, Your Feelings, Your Day-to-Day Activities, Your Overall Quality of Life, Your Lifestyle, Your Symptoms, Your Medication and Your Feedback, which gives you the opportunity to suggest improvements and additions to the questionnaire. When you come back to complete the questionnaires again, you might find something new!
We’ve made participating as straightforward as possible. If you don’t have time to complete a particular questionnaire in one sitting, you can save your answers and return within 24 hours to complete it. If you are unable to return within 24 hours, you’re welcome to come back and begin the questionnaire again when it’s more convenient.
The MS Register is concerned with how you’re affected on a day-to-day basis, so we need you to provide us with a series of information over the next two years. Once you’ve taken 10 minutes to answer the questions for the first time, we ask that you return regularly to repeat the process. Don’t worry, we’ll send you reminders so you won’t lose track. You can also check by returning to this website - your next questionnaire completion date will be displayed when you log in.
The more you return, the more valuable the information you share with us becomes. Our researchers are working hard to identify meaningful patterns in the information provided by the MS Register community. Patterns are far easier to spot when there’s more data to analyse!
If you decide at any point that you would rather not continue to take part in the MS Register, you are free to withdraw; you’re not required to inform us - though we would appreciate it if you did. If you withdraw and no longer wish to receive news of the MS Register by email, or you would like us to remove your details from our database, please let us know via the contact form on this website.
This web-based survey is a significant area of research, focussing on how MS affects your day-to-day life. In addition, a clinic-based study is taking place in pilot cities across the UK.
MS Register clinics are involved with researching the treatment of MS. If you attend any of the following NHS neurology centres, you can help us to link information about your everyday life with medical data. Linking data in this way will lead to discoveries that could improve healthcare and policies for people with MS in the UK.
- Royal Victoria Hospita l in Belfast
- Western General Hospital in Edinburgh
- St. Mary’s Hospital in London
- Queen’s Medical Centre in Nottingham
- Morriston Hospital in Swansea
The more people with MS contribute, the more likely we are to succeed in rolling the trial out across the UK and generating an even wider base of the knowledge we need to help people with MS. If you live near one of these clinics and would like to join the clinic-based study, simply ask your neurologist or MS specialist nurse for an MS Register information pack.
If you don’t have a participating NHS Centre near you, your contribution to the web-based survey is still hugely valuable and will make it easier for us to involve more clinics across the UK.
Please help us to develop a greater knowledge and understanding of MS; start the journey today.
The security of your information is our priority. The information you provide through this website and during our clinical study will only be used for MS Register research purposes. All data will be fully anonymised and stored on our secure, encrypted server, only accessible to MS Register researchers. We will never share your identifiable information with anyone outside of the MS Register without your prior consent.
The MS Register collects information from three sources:
- Information that you volunteer through the questionnaires on this website
- Information we gather through our NHS Centre clinical study
- NHS routine data
Gathering information from these different places makes our research more meaningful and valid, and makes significant new discoveries more likely. It’s rare for a medical research project to have access to so many sources of information; this is part of the reason that the MS Register is such an exciting and innovative project.
The information you give us through our online questionnaires
- Your Personal Details
We collect your personal information for two reasons:
So that we can get in touch with you. If our researchers need more information about a particular type of person - a female of 30-35, for example - we will occasionally search our database and make contact with an MS Register member on their behalf.
To make sure you remain anonymous, your name, address and contact details are stored separately from your other questionnaire responses. We do take a piece of information from your postcode, called the middle super output area, and connect it to your responses. The middle super output area is small enough for us to make meaningful comparisons in geographical statistics, but not so precise that we could identify you from it - it wouldn’t give your street name away, for example.
More in-depth personal information, like your gender, ethnicity and family background is hugely important to us - we use this information to identify new patterns in our data, and to see when existing patterns change. We ask about your family because this enables us to see if there is a genetic link in the disease. The answer to every question is vital to our MS research, and won’t be used for any other purpose.
- Questionnaire responses
The information that you enter through our online questionnaires is anonymised and encrypted. If you are only taking part in the online survey, and not the clinical study, the information you provide about your MS will not be linked with your name and address - so when our researchers are reading through your responses, they can’t see this information.
However, if our researchers come across a piece of information that they think is very important and that could be of considerable use to our research, they may want to get in touch with you for more information. In this case, the team responsible for keeping your information private and secure will contact you on the researcher’s behalf to maintain your anonymity.
This information will never be shared with anyone outside of the MS Register team - they will make contact with you personally. This happens very rarely.
- The information we gather through our clinical study
When MS Register participants enrol on the clinical part of this study, we ask for their permission to link their clinical information with the information provided through the questionnaires on this website. The information is linked using the unique code that we ask clinical study participants to enter before answering our online questionnaires.
Information gathered at the clinical centres is sent to our researchers through the NHS Informatics Service (NWIS). NWIS is responsible for managing and ensuring the security of information within the NHS. Your clinical information is not shared with anyone outside of the MS Register. NWIS is developed and maintained by Welsh NHS data experts and every measure has been taken to make NWIS as secure as possible.
Linking clinical information with the information we record through our online questionnaire allows us to see how your medical treatment influences your everyday experiences. This gives us a full picture of how you live with MS, and will lead to a more thorough understanding of MS and how best to treat it.
- Routine NHS information
The NHS supply us with anonymised information relating to MS inpatients at NHS hospitals. The NHS does this in order to contribute to research that will ultimately improve healthcare for people with MS.
Just like the information gathered in the MS Register clinical study, information relating to NHS inpatients with MS comes to the MS research team through NWIS and is fully anonymised and encrypted.
- We’re audited for extra peace of mind
The safe management of your personal information is of critical importance to us, we take every step possible to make sure it’s secure.
For your reassurance, we have gained official approval from the National Research Ethics Service Committee South West - Central Bristol. To gain this approval, Swansea University College of Medicine was required to go through a thorough audit of information management practices.
- If you opt-out from the MS Register, your details will be deleted
If, at any point, you decide you would rather not continue to take part in the MS Register, just let us know. Although the information you have given us through our online questionnaires or clinical study will remain in our database, we will delete your name and address and will have no way of linking this information to you.