To join the UK MS Register simply create your login details then view and accept the Terms & Conditions below.
If you'd like to find out more click here.
The security of your information is our priority. We hold your data under specific, explicit and recorded consent, which can be withdrawn or changed at any time. The information you provide through this website as a registered participant 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 approved MS Register researchers. We will never share your identifiable information with anyone outside of the MS Register without your prior consent.
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.
We collect your personal information for two reasons:
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.
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 UK MS Register is a research project that relies on people answering their questionnaires and so we will remind you via the email address you provide us when your questionnaires are ready every six months. This is an essential element of being part of the UK MS Register.
Every six months we send out reminders and give our participants a one month window to complete their questionnaires. This gives researchers consistent time frames to work with and to see how participants change over time. We will also notify you of any guest questionnaires that become available on our website from approved researchers.
If you do not wish to receive these emails then you can leave the project. However, you can choose whether or not to receive additional materials (such as newsletters or invitiations to other studies) at any time by choosing what and how you receive these in the preferences section of your profile.
If the hospital you attend is one of our partners, you are eligible to take part in 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.
You can also share your questionnaire responses with your clinician, which may give them better insight. This can be enabled through your preferences on your profile page.
Please speak with your clinician if you wish to take part.
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.
All data that researchers have access to is anonymised and nothing identifiable is ever released.
The data we collect is used by researchers here at Swansea University and also external researchers. In order to work with us, an external researcher must complete a series of application forms. These forms go to an Information Governance Research Panel which consists of a person with MS, a Neurologist, a member of the MS Society, a Professor at Swansea University who assess the application for relevance, participant burden, research value, and impact.
Regular reports on the progress of the project are sent to our funders - the MS Society and the South West Central Bristol Ethics committee.
Updates on activity about the MS Register can always be found on our website: ukmsregister.org.
We have also published a number of articles in peer reviewed journals. We present at conferences and meetings.
The UK MS Register aims to only release aggregate data to researchers. However, special exemptions may be made for studies where data will ultimately be sent to regulatory bodies such as National Institute of Health and Care Excellence (NICE), The European Medicines Agency (EMA) or the Food and Drug Administration (FDA), or third party agencies or commercial companies (including C Path in the USA) that prepare data for submission to these regulators, which in the case of the FDA or EMA are outside of the UK. Should this be required for a sub-study, participants will be informed at the time of joining through an additional consent. The limited dataset that is released will contain no identifying features and will be further anonymised prior to transfer to regulatory bodies.
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, our IT infrastructure is ISO27001 certified in Information Security Management, which is the best-known standard. The study has also been reviewed and been given approval by South West – Central Bristol Research Ethics Committee (16/SW/0194), an independent NHS Research Ethics Committee in order to protect your safety, rights, wellbeing and dignity. To gain this approval, Swansea University Medical School was required to go through a thorough audit of information management practices.
If, at any point, you decide you would rather not continue to take part in the UK MS Register, just let us know. You can leave through a link in your profile or by contacting us.
There are two options for leaving:
*Any completed or on-going research before you leave will retain anonymised aggregate data
We cannot promise that the study will help you personally, but the information we obtain will help researchers make way to improve the care and treatment of people with MS.
This site is intended for research and educational purposes only. It is not intended to replace consulting your doctor or health professional. When in doubt, always seek professional medical advice. The feedback provided on the website is devolved using the information that you have provided to us (your questionnaire results, the medication you have reported, relapse information, outcomes, charts, images etc). This is for information purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your Doctor or MS Team with any questions you may have regarding your health.