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.

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What’s Involved

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.

We ask you to return and log back on in three months’ time and the more you return, the more valuable the information you share with us becomes. Don’t worry we will send you an email reminder when it is time to log back on.

You can leave the register at any time – just let us know and we will remove your details from the database.

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NHS Centres

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 selected NHS hospitals and Treatment centres across the UK.

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.

Participating Clinics

  • Abertawe Bro Morgannwg University Health Board (Morriston Hospital)
  • Barking Havering and Redbridge Foundation Trust
  • Basildon and Thurrock NHS Foundation Trusts
  • Basingstoke and Hampshire NHS Foundation Trust
  • Belfast Health and Social Care Trust
  • Brighton and Haywards Heath
  • Frimley Health Foundation Trust
  • James Paget University Hospital (Norfolk)
  • John Radcliffe (Oxford)
  • Luton and Dunstable NHS Foundation Trust
  • Northampton Hospital
  • Nottingham University Hospital NHS Trust (Queen's Medical Centre)
  • Pinderfields Hospital (Wakefield)
  • Plymouth Hospitals NHS Trust
  • Poole Hospital
  • Portsmouth Hospitals NHS Trust
  • Royal Cornwall Hospitals NHS Trust
  • Royal Devon and Exeter Hospital
  • Royal Free and Chase Farm (London)
  • Royal London Hospital
  • Royal Victoria Infirmary (Newcastle)
  • Salford Royal (Manchester)
  • Southampton General Hospital
  • Southend University Hospital
  • Southern Health and Social Care Trust (Belfast)
  • Stoke Mandeville Hospital (Bucks)
  • The Ipswich Hospital NHS Trust
  • Torbay Hospital
  • National Hospital for Neurology and Neurosurgery (London)

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.

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Your Privacy

The UK MS Register is committed to protecting the privacy of all individuals who work with us, and complies with the principles of the relevant data protection regulations. We are committed to ensuring that your data is handled properly and any information we hold is stored securely and used in a lawful and ethical way.

This privacy statement explains:

  • An overview of the MS Register
  • On what grounds we hold your personal data
  • What data we collect and how it is used
  • Data storage and security
  • Your data and your rights: right to leave and right to complain

This Privacy Statement relates to the collection, handling and storage of data we obtain from individuals who are participants of the MS Register, and those work with us to undertake research projects.

Overview

The UK MS Register is based in Swansea University, Data Science Building, Singleton Campus, Swansea University SA3 4UE.

Tel: 01792 606 354

Email: contact@ukmsregister.org

  • The MS Register collects data from three sources:

1. Information that you volunteer through the questionnaires on this website

2. Information we gather through our NHS Centre clinical study

3. 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 unusual 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 security of your information is our first priority. The information you provide will only be used for research purposes. All data will be fully anonymised and stored on our secure, encrypted server, only accessible to approved Researchers. We will never share your identifiable information with anyone outside of the MS Register without gaining your explicit prior consent on a case by case basis.

The legal grounds on which we process your personal data

In order to communicate with you and also make sure that you are receiving relevant questionnaires, the MS Register has to process your personal data. The lawful basis that we process this data is under GDPR Article 6(1)(e): ‘Task in the public interest’. If you have told us that you want to be contacted by us about other research, trials and events that you might be eligible for, we will process your data under GDPR Article 6 (1)(f) or legitimate interest for processing general personal data.

Please read the following sections about what we collect and why we need to and what we do with this data.

The data we collect

The data we collect is used by researchers at Swansea University and also external researchers, subject to appropriate governance. All data that researchers have access to is anonymised and nothing identifiable is ever released. 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 people with MS, Neurologists, Professors at Swansea University and Researchers who assess the application for relevance, participant burden, research value, and impact.

Your Personal Data

Your personal demographic information (name, address, date of birth and NHS number) is only used by the MS Register team for the following purposes.

1. So that we can get in touch with you. For example if an approved researcher wanted to ask a questionnaire to a particular demographic such as people with Secondary Progressive MS and 50 years old then we can search for anyone who fits in with this category and make sure the questionnaire is available to them. Also we collect your personal data so we can email you with reminders that it is time to answer your questionnaires, which is an essential element of being part of the MS Register Project.

2. Data Linkage. We occasionally use your identifiable information to link to other data that are made available to the MS Register. For example, if you have given your consent at your hospital for your medical records to be linked with the Register, we might link these two data sets using your post code and date of birth.

3. Sharing your data back to your MS clinician. If you have requested us to do this (using the opt in on your preferences page) then we will share your questionnaire responses and your identifiable data back to your selected clinician/MS team. We will only do this is you have consented for this to happen.

To ensure you remain anonymous to researchers who are not part of the MS Register team, your name, address and contact details are stored separately from your questionnaire responses. We do take a piece of information from your postcode, called the lower super output area (LSOA), and connect it to your responses. The LSOA 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.

If you have chosen to see your self-supplied data, it will be available and visible to you on the hub page of the website when you log in. It is your responsibility to make sure that you log out after a session especially if you are on a public computer. If you choose to print off any of your information – this is also your responsibility. The MS Register accepts no responsibility for the loss of the hard copy of your data should you choose to print it.

You are responsible for keeping your password and user details confidential. Members from the MS Register team will ever ask for your password.

Updating information: Please let us know if the personal information which we hold about you needs to be corrected or updated.

Questionnaire responses

The information that you enter through our online questionnaires is anonymised before it is used for research. The information you provide about your MS are not linked with your name and address - so when 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 MS Register 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.

Clinical Study data

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, informed consent is requested at the clinic so we have your permission to collect your clinical information and medical records. If participants are also part of the online study we ask permission to link 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. Identifiable information gathered at the clinical centres is not shared with anyone outside of the MS Register.

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.

Routine NHS information

The NHS supplies us with information relating to MS patients at GPs and 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 a trusted third party and is fully anonymised before it is made available for research.

Who is your data shared with?

Your personal data is not shared with anyone. The answers to your questionnaires and anything that you have told us on the website is anonymised before being used for research and nothing identifiable is ever released without your explicit consent.

Contacting you

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. This is an essential element of being part of the UK MS Register, however you are under no obligation to answer the questionnaires. There is a two week to one month window where the questionnaires remain open to give you a chance to answer them. We will send you a couple of reminders if you haven’t come back. This gives researchers consistent time frames to work with and to see how participants change over time and also participants will know when to expect the questionnaires each year.

These emails are necessary for the project and if you do not wish to receive them then you would leave the project. However, you can choose whether or not to receive additional materials (such as newsletters or invitations to other studies) at any time by choosing what and how you receive these in the preferences section of your profile.

Data storage and security

We are committed to keeping your data secure. Any data you provide to us will be held only on secure servers owned and administered by Swansea University which are subject to suitable physical, electronic, and managerial procedures to safeguard and secure the information we collect.

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.

Cookies

The MS Register website uses cookies to remember the login details of registered users. The cookie stores a session ID and user ID to enable a persistent login state.

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.

The Register website also uses Google Analytics cookies to determine unique visitors to the site, calculate average time spent on the website by users and determine how the website was reached (i.e. via search engine or direct link).

You responsibilities

If you have chosen to see your self-supplied data, it will be available and visible to you on the hub page of the website when you log in. it is your responsibility to make sure that you log out after a session especially if you are on a public computer. If you choose to print off any of your information – this is also your responsibility. The MS Register accepts no responsibility for the loss of the hard copy of your data should you choose to print it.

You are responsible for keeping your password and user details confidential. We will not ask you for your password (except when you log in to the website).

How long will we keep your personal data?

We will keep your personal data for 20 years after the study is completed unless you tell us that you would like to leave the study.

No obligation to provide data

You are under no obligation to provide personal data or any other data. If you do not wish to be part of the Register you do not have to be. By joining the MS Register Project you are under no obligation to complete each set of questionnaires. We only ask you try your best to when you can. You can leave the study whenever you please. See section above.

Your data and your rights

The General Data Protection Regulation (GDPR) strengthens and adds to individuals’ rights that exist under the Data Protection Act and SAIL is committed to supporting these rights.

You have a right to access your personal information, to rectify, to erase, to restrict and to port your personal information. Please visit the Swansea University Data Protection webpages for further information in relation to your rights.

Swansea University has a Data Protection Officer who can be contacted through dataprotection@swansea.ac.uk

Any requests or objections should be made in writing to the University Data Protection Officer:

University Compliance Officer (FOI/DP)

Vice Chancellor’s Office

Swansea University

Singleton Park

Swansea

SA2 8PP

Email: dataprotection@swansea.ac.uk

Right to leave study

You can leave the study at any time

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, by a link on any email that we send 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

Right to lodge a complaint

Should any issue arise during the study that you are unhappy about please do not hesitate to contact us. We will do our best to answer your questions. If you remain unhappy and wish to complain formally you can do so in writing by contacting the University Data Protection Officer:

University Compliance Officer (FOI/DP)

Vice Chancellor’s Office

Swansea University

Singleton Park

Swansea

SA2 8PP

Email: dataprotection@swansea.ac.uk

Disclaimer

We cannot promise that the study will help you personally, but the information we obtain will help researchers conduct important research 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 developed 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 informational 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.

Changes to this privacy notice

We keep our privacy notice under regular review. This privacy notice will be reviewed annually

About this privacy notice

This is version 2.1 of the privacy statement, originally published 2011 as version 1 and most recently amended on 22/5/2018

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