Do people with MS want to know their Prognosis?


In 2015 we asked our participants to answer a questionnaire about prognosis on behalf of a team of researchers at the University of Southampton.

In just under three months, over 3000 Register participants answered the questionnaire and the team of researchers have just published their findings.

Prognosis is a term used to describe a prediction of the likely or expected development of a disease. There is limited research about how people with MS feel about this subject and to try to find out more, this questionnaire asked about people’s experiences with communication about their prognosis and what their attitudes and preferences were regarding their long term prognosis.

The results

The results showed that most participants wanted to know their long-term prognosis. This varied at different stages of their MS.

Percentages of participants who wanted to know their long term prognosis, did not want to know or were unsure.

Most participants felt that long-term prognosis information would help them with decision-making, especially when thinking about the following things

Treatment options (71.2%),

Finances (77.8%)

and end-of-life care (78.3%).

Other findings

The study reports back two other interesting findings. “Around half of participants claimed to have never discussed their long term prognosis with their neurology team and around half claimed to have ‘no idea’ about their long term prognosis” (discussion section of the paper)

One of the main findings of the study was that many people with MS really do want to have more information on their long term prognosis, they claim to think about it often and it is thought of as useful thing to know about when making decisions about treatment and other life issues. Of course there is still an important minority who did not want to know and this preference should not be overlooked.

What now?

This study is of interest because Health Care professionals may consider changing the way that they communicate patient’s long term prognosis. Prototype software tools exist to deliver estimates of prognosis of an individual person with MS, based on very large real-life data sets. There is more work to be done to look at the best ways to communicate the predictions that this tool could provide, and how these predictions could affect patient’s emotional well being and decision making.

The paper is called “Do people with multiple sclerosis want to know their prognosis? A UK nationwide study.”

The authors are: Laura Dennison, Martina Brown, Sarah Kirby, Ian Galea


Exciting new changes to the Register website…. coming soon!

You might have noticed that you haven’t heard very much from us recently. This is because we are focusing all of our attention on the next version of the website – which we are very excited about!

Some of the new features will include

  • Asking you to return six monthly instead of every three months
  • The website will be easier to use – to log in, see your profile and what you have told us about you and your MS.
  • Provide more feedback on the research the project is generating that YOU have contributed to
  • Give you the option to see your previous responses to the questionnaires. This can be downloaded and taken to appointments or viewed any time on your device.
  • Give you the option to share your results with your clinician (if treated at one of our partner sites)

The star bar is going to disappear and be replaced with a different system which you can also choose to see or not. Another interesting aspect of the new version of the website will be focusing on the research the project is generating. This will help to demonstrate the point of contributing to the Register and adding to the growing body of data.

We would like to urge you to log on and make sure that your details and questionnaires are up to date before the relaunch so that when you log in everything is up to date and accurate

Thanks for your patience while we work on the new website.

The UK MS Register Team.


Ask the Register: Family Prevalence and MS

Thanks to our participants, the MS Register has a huge wealth of information about living with MS in the UK. This data gets analysed by researchers from both Swansea University, where we are based, and also by external researchers. They look at the data to attempt to answer important research questions such as what sort of level of access do people with progressive MS have to services in the UK or for example the role of nutrition in alleviating symptoms of MS, to highlight a couple of recent studies.

But what about you? What would you like to find out from this vast collection of data from people with MS in the UK? We asked our participants if they had any questions that we could try to answer with the data.

“I’m curious to know how many parents with MS have children who also have MS?”

On one of our questionnaires we ask: “Do you have a relation with MS and if so what is their relationship to you?”



These results are not a reflection of the likelihood of a relative
of someone with MS getting MS or not, they are results from
our population of people with MS There has been a great deal
of research around the genetics and family prevalence of MS
and the MS Society produced a great fact sheet summarising
the research in 2015.

By looking at several different studies from around the world,
the MS society reported back in more detail about family

  • If a parent has MS: about a 1.5% chance (1 in 67)
  • If a brother or sister has MS: about a 2.7% chance (1 in 37)

But even for the closest of relatives there’s still a much greater
chance that a person will not develop MS.

Ask the Register: Vitamin D and MS

“I take a ‘high dose’ Vitamin D supplement every day, how many other people on the MS Register take Vitamin D?”

Did you know you can enter more than just your Disease Modifying Treatments in our medication questionnaire? Many of you did and have listed the supplements that you take.

9929 people who have answered the medication questionnaire
12.6% of you take Vitamin D supplementation.

The clinical community is learning a great deal about the role that Vitamin D plays in MS, but they still don’t know for sure if Vitamin D supplements could help manage MS. The MS Society has researching the effects of Vitamin D as one of their top ten research priorities.

We recently published a paper on ‘Sun, sea and season of birth’
looking at data we have from Wales.

Map and figures taken from paper ‘Sunshine, Sea, and Season of Birth: MS Incidence in Wales’

The paper was an attempt to explore if sunshine, proximity to the sea, and month of birth can be linked with the incidence of MS in Wales.

Some of the results we found were:

  • More northerly areas (increased latitude) had a higher incidence.
  • Areas with more sunshine had lower incidence (Figures 1 & 2).
  • More easterly coastal areas had lower incidence (Figure 4).

And before you pack up and move to the coast, it seemed that the benefit of being in a coastal area is debatable because coastal areas in the south tended to be areas with higher sunshine.



Smoking and MS

Dr Jeffrey Rodgers, MS Register Analyst

Jeff our analyst took a look at the results from the question we ask on smoking. His preliminary analysis was shortlisted for ‘Best Poster Award’ in the biggest MS conference of the year in Paris. ECTRIMS has over 10,000 delegates and 4000 poster submissions from the international community of MS researchers. Jeff’s work looked at how many of our participants smoke, or have smoked, and how do our participant’s reported habits reflect those of the national population?

Since 2014, the MS Register has asked participant’s about (tobacco) smoking in the questionnaire called ‘My lifestyle’. We ask: Have you ever smoked, if so how many and how often, have they quit, and if so the when?

Smoking graphic
Results showing how people answered the Smoking question on the MS Register.

This is higher than the 15.8% smoking incidence in for the whole UK population reported by the office of national statistics, although proportions of smokers by sex were similar

Despite the well-publicised negative effects of smoking and its impact on the efficacy of disease modifying treatments, a large percentage of people across all types of MS, at all ages continue to smoke.

A need for more information?

This could indicate that there is a need for increased information about the effects of smoking from clinical staff directly to PwMS. Additionally, relevant third sector organisations could highlight these impacts in the wider population, to affect a more profound change.

The NHS website has some great information on how to give up smoking. Take a look at their ten top tips.

Partner sites

We work with over 35 NHS hospitals. Is your hospital one of them?

Check using our interactive map which shows the sites that we work with.

Are you treated by one of these sites? If you attend any of the hospitals listed then you could have your medical records linked to your online information – this provides us with the most comprehensive overview of your MS.

Send us an email to and we will post you out a pack to have a read through.


Happy New year!

We would like to thank you for all your input to the questionnaires in 2017!

Your responses have been helping researchers look at a huge variety of topics including: MS onset and diagnosis information, smoking, access to treatment, care and support data and accessibility and MS in the workplace.

Our next Newsletter will be out at the start of January and will go into the results of some of these studies in more detail.

Next year will bring a very exciting new look to the MS Register website with extra features that will make it more relevant to YOU. Please keep answering your questionnaires so that when the new site is launched you will be able to see all your answers over time and look how things have changed.

Happy New Year from the UK MS Register Team!

Helvetia Ship wreck, Rhossilli, Gower, Swansea.

A little experiment

Participants of the UK MS Register, can you help us with an experiment?

We would like to see if activity data from smartphones represents a realistic way of capturing data and if if it does, how could this link to your answers to the questionnaires on the MS Register website.

We are always trying to think of ways to make the gathering of data for research easier and more relevant to today’s changing technologies and lifestyles. iPhones have a built in Health app which, depending on how much you decide to make use of it, can record or help you log many aspects of your daily activity such as movement, sleep and even mindfulness and nutrition.

We would like to ask you to email us the activity data from your iPhone, straight from the Health app. We are specifically interested in your step data, though if you have been entering other information (such as diet) into the app we will receive this also.

Only people with an iPhone 5s or above can participate.

So if you have an iPhone 5s or above and a few minutes, please follow the instructions here or watch the you tube video here and share your health app stats with us.

I have an Android phone, why cant I take part?

At the moment there are a lot of competing standards on Android where the data is captured. If the iPhone experiment is successful we will look into being able to capture data from Android too.

Do I have to take part?

No! There is no requirement for you to take part in this, we are just trying to establish what would be useful in the future for the Register. We would like to stress that as usual identifiable data in never released by the Register team.

Will we see how the experiment goes?

We will feed back on social media and our blog on the website in march with basic results of how many responded and what we see. If you send us the data from the email address that you use for the MS Register, will also be able see a graph of your app data into the ‘Your Results’ section of the portal.

A step by step document on how to do it:

Here is a How to video!

Nutrition, Activities of Daily Living & Fatigue questionnaires

In September, Oxford Brookes University produced three questionnaires that focused on understanding whether nutrition can affect the symptoms that people with MS experience.  Dr Shelley Coe says that “Nutrition can play a significant role in alleviating the symptoms experienced in people with Multiple Sclerosis. However, in order to understand how we can use diet to improve the lives of people with MS, we need to understand what exactly people are currently eating. We would greatly appreciate if you could take the time to complete food frequency, fatigue and daily living questionnaires as well as update anything you need to on your profile so that we can try and gather this valuable information.”  These questionnaires are still available on the Register website until the end of November, so there is still time to complete them if you haven’t already.

Share data with your NHS Team

We are always trying to make the Register more useful to you and your clinical team. Since the day we launched we have been hearing that some people would like to share their responses with their clinicians.  We understand that not everyone wants to do this, but for those that do, we want to offer the choice!

Please be aware that not all clinicians participate in the MS Register and will not necessarily be able to (or want to) read any data that you provide. This is currently a trial for a few sites and if successful could be made more widely available.

If you WOULD like to share your data with your clinical team, then you can opt in to do so by clicking the ‘Share Data with your NHS Team’ once you are logged in to the Register.

There are no implications to NOT sharing data. The default is always to not share data; you have to explicitly choose what questionnaires you are happy to share.

To share your data securely, you need to login to the Register.  Click on ‘Your details’ and confirm your postcode, by checking it’s correct and then click ‘Complete’.  Next on the left hand side, click on ‘Share data with your NHS Team,’

Based on the postcode you have entered and confirmed, the first dropdown should have found hospitals near to where you live.  You need to click on the drop down and choose the hospital you attend.

Next pick which questionnaires you are happy to share data from.  It is entirely up to you what you decide to share from the list.  Then click the ‘Complete’ button.  If your hospital isn’t affiliated to the Register, you will be taken to the ‘Your details’ page and then you can either update some questionnaires! Or sign out.  If you don’t have a study ID then you have finished.

Next, if you have your study ID (not everyone has) you will be taken to the ‘Study ID page.’  On your consent form there is a Unique Study ID number (which is on the bottom right of the consent form that you signed and were given a copy of by your MS nurse or Doctor, if you cannot find it, please let us know).  You can type your 6 digit number into the boxes and then click ‘Submit Code’ button.  Now you’ve finished, and you can either complete a questionnaire if convenient or log out.

Also, we have recently created a YouTube video to show you how to add your study ID.  Watch it here:

If you need any further information please email

The UK MS Register Team




Recruitment is well underway for the MS-SMART TRIAL

MS-SMART has started and recruitment into the trial will continue through 2015. Two centres are currently open and all centres taking part will be open soon. 

Multiple Sclerosis (MS)
 is a disabling and progressive neurological disease that affects approximately 100,000 people in the UK.  The Secondary Progressive (SPMS) type of disease causes slow, cumulative and irreversible disability affecting walking, balance, vision, cognition, pain control and bladder and bowel function. Critically, and unlike early disease, there is no proven treatment for the late stage of MS.  This is therefore an urgent and major unmet health need.

MS-SMART is a phase 2 clinical trial in people with Secondary Progressive MS, which has been part-funded by the MS-Society. It is testing three different drugs (Amiloride, Riluzole and Fluoxetine) against a placebo (dummy drug) to see if they can slow the worsening of disability. Read more about MS-SMART on the MS Society website:

The trial is looking to recruit participants for its London centre at the National Hospital for Neurology & Neurosurgery at Queen Square, as well as other sites in Edinburgh, Brighton, Liverpool, Newcastle, Nottingham, Oxford, Plymouth, Sheffield, Stoke-on-Trent and Truro.

Recruitment for the trial will continue until the end of spring 2016. The trial needs 440 people in total across all the sites for this study and the team at UCL are aiming to recruit 160 of these from London. They need another 50 or so!

What’s involved?

Initially participants are interviewed over the phone to check whether they are eligible. They are then invited to the clinic for further assessment before enrolling on the study. In total the trial involves around 11 visits to the clinic: 8 in the first year and 3 in the second. During the 2 year study, participants undergo three MRIs (One at the beginning, 6 months later and at the end). Also, they need to complete questionnaires and provide blood samples throughout.

Who is eligible for the trial?

The trial is recruiting people between the ages of 25 and 65 (inclusive) with a confirmed Secondary Progressive diagnosis and steady progression in disability. More specifically, people with an Expanded Disability Status Scale (EDSS) of 4-6.5. This means that the researchers can enrol patients who are still able to walk at least 20 metres (with the support of 2 crutches) or up to 500 metres without help. Unfortunately, they cannot enrol anyone who has any significant co-morbidities (E.g. Depression, glaucoma, epilepsy, malignancy), or is taking Immunosuppressants, SSRIs (E.g. Citalopram) or any disease modifying treatments.

How to find out more..

If you’re interested in taking part, either email: or call 07572898453.  Visit the MS-Smart website:

Hear from London based neurologist Dr Domenico Plantone, who is working closely on the trial as a Clinical Research Associate.

You can also visit the MS-SMART website to sign up or find out more. Recruitment for the trial will continue until the end of spring 2016. The trial needs 440 people in total across all the sites for this study and the team at UCL are aiming to recruit 160 of these from London. They need another 50 or so!

Recent Questionnaire on Cognitive Rehabilitation for Attention and Memory in MS

CRAMMS trial recruiting from UK MS register

Cognitive problems, such as forgetting to do things and not being able to pay attention, are a common and frustrating consequence of MS but very few centres offer specific training to people with MS on how to deal with these. The CRAMMS (Cognitive Rehabilitation for Attention and Memory in people with MS) trial is now up and running for people with memory and attention problems. The trial is designed to find out whether attending a series of ten group cognitive rehabilitation sessions  compared to not attending such groups reduces the impact of memory problems in daily life and improves quality of life

The study is currently running in the Nottingham, Sheffield and Liverpool areas and will soon also start up in Bristol. People from the surrounding geographical areas are invited to take part.  It is restricted to these areas as treatment takes place at one of the four participating sites. Treatment takes place for one session a week for ten consecutive weeks. People are taught about the nature of memory problems. They are taught strategies to help them pay better attention. We also discuss the use of internal memory aids, such as rhymes, creating stories and using first letters as a clue, and the use of external memory aids, such as notebooks, diaries and calendars.

We have recruited some participants through the UKL MS register. People living close to one of our recruitment centres were invited to complete the MS Neuropsychological Screening Questionnaire. Those who scored more than 27 were invited to join the CRAMMS trial. Just under 500 people completed the MS Neuropsychological Screening Questionnaire and about half were invited to take part in the CRAMMS trial. So far 26 replies have been received to our invitation to take part in the study.

In terms of the trial as a whole, 98 people have consented to take part and 48 have been allocated to receive treatment or not. Five treatment groups have been run, three in Nottingham and one in Liverpool and one in Sheffield.  The feedback from those who have received treatment has been positive. For example, participants have reported that they feel more in control of their memory problems and have learned new strategies to try to cope with them.

The study will carry on until 400 people have been included so there is still opportunity for those with memory or attention problems to join the study. Further details can be obtained from  or from the MS Society website


Progressive MS and Physiotherapy

Coming soon…..we have teamed up with researchers from The University of Glasgow to investigate what people with progressive forms of MS think about physiotherapy and other rehabilitation services.

In particular, the questionnaire will seek to find out the proportion of people on the UK MS register with a progressive form of MS who use physiotherapy services, their opinion of physiotherapy and how they would like physiotherapy to be delivered. It will also explore how physiotherapy services vary across the UK and what other types of rehabilitation services are used.

The team at The University of Glasgow are keen to find out if there are any links between the level of disability, quality of life and how worthwhile people think physiotherapy is for them. The questionnaire is focussing on people with progressive forms of MS because rehabilitation for this sub-group has been highlighted as an area that requires more research. Indeed, with the formation of the Progressive MS Alliance, there has been an increased focus within the international MS Research community on treatments, therapies and symptom management for progressive MS.(

Ev headshot

Evan Campbell, a Physiotherapist and the study’s Chief Investigator said, “Physiotherapy is often used by people with progressive MS. As physiotherapists, we often think that we know what people think of physiotherapy from our experiences with patients; however this may not be the whole picture. This questionnaire will not only give us an insight into how access and use of physiotherapy services vary across the UK but how people with progressive MS would like their physiotherapy to be delivered and what their honest opinion is of physiotherapy. In addition, we will also be able to see how many people across the UK are able to access other MS specialist services and complimentary therapies. The results of this study may highlight gaps in physiotherapy services and influence future guidelines for rehabilitation services”. This questionnaire is due to be released in late July 2015 and will be available to anyone on the Register who has indicated through their responses that they have Primary or Secondary Progressive MS.


Last chance to give us your opinion on Prognosis and MS

In just under three months, over 3000 Register participants have answered the prognosis questionnaire on the UK MS Register website. With under a week to go, we are urging anyone who hasn’t already done so, to log on and answer this questionnaire on your views about prognosis and MS.

The questionnaire is in collaboration with colleagues from Southampton University who are asking your opinion on the idea of an on-line program that estimates long-term prognosis for people with MS. This study is asking whether, when and how this tool ought to be offered.

This high number of responses in such a short space if time is very impressive and demonstrates the utility of the Register as a research platform. Attempting to carry out this type of research study using more traditional means such as through MS clinics, MS groups or even post, would struggle to get this number of responses in this space of time. The responses come from people based across the UK which will go toward ensuring that the view points from people across the whole of the UK are taken into account.

So to all of our participants who have answered – thank you! And for those who haven’t, please log on and complete the questionnaire by the end of May.

Log on here:

Local group present us with cheque for MS Society

The UK MS Register had a visit from four members of Sardis Chapel in Ystradgynlais, Swansea yesterday.

After holding a concert in Sardis Chapel that involved a Welsh Female Choir accompanied in parts by some local children, the group managed to raise £600 for charity. Half of the proceeds went to Diabetes UK and the other they wanted to donate to MS. They came along to the Swansea University to present a cheque of £300 for us to pass on to the MS Society towards Research.

Presenting the cheque to Rod Middleton, Project Manager

Presenting the cheque to Rod Middleton, Project Manager of the UK MS Register

On behalf of the MS Society, thank you very much everyone from Sardis Chapel in Ystradgynlais!


What’s in a name?

Our colleagues at Barts and the London would like to know how you prefer to be referred to by academics and clinicians in both formal (scientific publications and grants) and informal (online, in social media etc) settings.

Whilst we appreciate that no one likes to be labelled, it is required when academics, clinicians or journalists report ideas or results in social media,… publications, articles etc. The team at Barts and the London plan to publish a scientific paper on the results and we will, of course, let you know what we find in our newsletter and blog.

Log on now to answer this short opinion poll.


UCL Partners 6th Research day

Katie and Rod from UK MS Register Team attended UCL Partners 6th Research day on Saturday 21st March in London.

The event was set up so that people affected by MS were not only able to listen to presentations about existing and emerging therapies in MS and several other research topics, but where they also had chances to talk to the researchers themselves face to face. After each presentation, a different researcher joined each table in the main hall and attendees had 15 minutes in which to ask them questions. It was a great way for people with MS to engage with researchers.

The UK MS Register is expanding the clinical sites that we are working with which include a number of the UCL Partners hospitals, including the Royal London, The National Hospital for Neurology and Neurosurgery, Queens Square and Basildon.  It was great to meet so many people from these hospitals and everyone was keen to sign up to the Register – thank you!

Katie at the UK MS Register table

Katie at the UK MS Register table

Prognosis in MS

Our new questionnaire ‘Prognosis in MS’ (PiMS) has been live for three weeks now. In the first week, over 1500 answered, so thank you very much!  For those of you who haven’t logged back on to complete it yet, it will be available until around the 25th May 2015. It is being carried out in collaboration with Southampton University and we will let you know the results later on this year.

Here is a link to a blog about the study by the MS Society


New Questionnaire coming soon!

We are working in collaboration with colleagues from Southampton University who have designed a research study asking your opinions on on-line program that estimates long-term prognosis for people with MS. 

The main aim of this study is to improve the experience of people with MS when their prognosis is being discussed with health professionals. Prognosis is a term used to describe the prediction of how their condition is likely to progress. We know that people who understand their condition in more detail have greater control over their own care and are better equipped to make informed choices about their treatment.

The delivery of a prognosis is ordinarily a very personal matter, which needs to be tailored to the individual. This project is studying the potential use of a new, on-line program they have developed which can estimate an individual’s long-term outlook. They would like to know how people envisage that this program might enhance their experience of discussions around prognosis. For example, whether, when, where and how should this program be used? Is it likely to improve on existing information channels and ultimately provide benefit to the MS community? How do people with MS deal with uncertainty about their prognosis, and how would this program affect this?

In the next few weeks, you will find the questionnaire at the bottom of the list of your usual questionnaires. We will send you an email when it is live and ready to go.  We will let you know what the final results of this poll are when we get the results in October 2015.

For more information, please contact Martina Brown, Senior Research Nurse, by emailing or the MS Register team


UK MS Register Team #wigoutforMS

The Register team took part in #ichallengeMS and wore a bright orange wig every Wednesday throughout September.

It was great fun to take part and we received some very strange looks, especially in Boston on the way to, and at the largest MS conference for MS in the world and at the Swansea University Freshers Fayre.

We raised  £110.74 sponsorship for the MS Society – thanks to all who donated!


MS Boston 2014 ACTRIMS/ECTRIMS Conference

The UK MS Register team attended the worlds largest conference about Multiple Sclerosis earlier this month in Boston. We attended talks and lectures and met with many of our current partner Neurologists and future collaborators.

All of these international Neurologists and Charities coming together in one place leads to great opportunities. One of which is the MS Society teaming up with other MS Charities across the world to fund 22 projects aimed at developing successful treatments for people with progressive MS. More than £17 million has been allocated for this new alliance and research.

See more here:


Rod, the Project Manager by our poster
Rod, the Project Manager by our poster

Only 0.5% of UK MS Register participants have stated that they are an Asian with MS.

The UK MS Register is not, as it may sound, a count of all those who have MS in the UK, but a unique ground-breaking study designed to increase our knowledge of living with MS in the UK.  The answers to the questionnaires on the website are compiled and researched by the team at Swansea University and other researchers across the UK – all aiming to understand MS and the effects it has on people’s lives.

There are nearly 11,000 people who have signed up so far, however, only 57 people have answered “I am British Asian (Indian / Pakistani / Bangladeshi)” in the ethnicity questionnaire.  That works out to be just over 0.5% of the participants who are answering questions on the UK MS Register website. We need more representation from all ethnic groups!

The Ethnicity Question is based on the current standard NHS ethnicity monitoring questionnaire and does not allow for the greatest detail, but the number of people who have answered this question from an Asian background is low!

The Register currently has over 10% of the estimated 100,000 people with MS in the UK on board with us and we can see that the data that we are getting from the questionnaires is representative of the UK MS Population (for example the number of males and females with MS or the proportions of MS type), so please help us help get Asians’ with MS represented as accurately as possible. Data from the Register works towards influencing policy and improving care of MS in the UK.

Some of the reasons that are considered barriers to the Register in general, are thought to be limited IT access or skills and language barriers, but we are trying to encourage family members of friends to help their loved ones with MS to go online and answer our questionnaires.

So in order for your voice to be heard, please tell your friends, relatives and your local groups to encourage anyone with MS, to please log onto and start helping to make sense of MS.

You can call Katie from the UK MS Register Team on 01792 606 354 or email the team if you need any help or have any questions.



Letter from Drugs Minister: Cannabis should be available for medicinal use

A letter has been published today (14th August 2014) in various newspapers from Norman Baker MP, the Drugs Minister to Jeremy Hunt, Health Secretary. He suggests that drug laws should be relaxed to allow people with MS and other health conditions to use cannabis for medicinal purposes. Sativex – which is made from cannabis and is licensed to treat muscle spasms and stiffness in people with MS is not currently available on the NHS. There are concerns that people are being forced to break the law to secure the only substance that can help to relieve their condition.

See the MS Society article on their website for more details