My MS My Needs 3

Together with the MS Society we’re launching the third My MS My Needs survey – your chance to tell us what it’s like living with MS in the UK today.

My MS My Needs is one of the largest surveys of people affected by MS in the UK. It asks whether people with MS are getting the treatments, services and support that they need. And this information is invaluable for our campaigning work – highlighting where services work well, and more importantly, where improvement is needed.

Our 2019 survey is now open!

What do we do with the results?

In 2016, over 11,000 people with MS completed the survey. The results were the driving force behind a number of our campaigns.

Treat me right

We’re campaigning for the right treatment at the right time for people with MS, whatever your situation, wherever you live.

Survey results from 2013 and 2016 found that around half of all people eligible to take a disease modifying therapy (DMT) aren’t taking them. While the number is going up, we want more people who can take a DMT to have access to the treatment they deserve.

We hope the 2019 survey results will show that more people than ever can access and are taking the DMT they need.We’re working with MPs, health care professionals and people living with MS to understand what barriers there are to taking a DMT, and how we can remove them. And in 2018, we launched ‘Our treatment stories’, where people with MS talk about what factors affected their decision to take a DMT.

MS: Enough

The 2016 survey found that 12% of people were struggling or really struggling on their current income, even after receiving benefits. Our MS: Enough campaign thinks that having MS is enough. It shouldn’t be made harder by a welfare system that doesn’t make sense.

So in 2018, we launched our campaign to scrap the PIP 20 metre rule, which makes it harder for people with MS to receive the support they need to live independent lives. Over 36,000 of you signed the petition, letting the government know that enough is enough.

End the care crisis

Our 2016 survey showed, compared with the 2013 survey, higher proportions of people are now paying for care and relying on family and friends to care for them. And only 1 in 3 people are getting the support they need with essential everyday activities like washing, dressing and eating.

Following these results, we successfully campaigned for more funding for social care in England, with some additional money delivered in 2017 and 2018.

We still have a way to go to before we have a properly funded social care system that people with MS can rely on, which is why this 2019 survey is so important to help us keep fighting.

We need your support

The 2019 My MS My Needs survey is open now until Friday 31 May. We need to hear from as many people as possible who are living with MS in the UK. The results will help us shape our campaigning work over the next few years to ensure people with MS are getting the best service and support possible.

The technical bits

The survey is available online through the UK MS Register. You’ll need to create an account with the Register, and answer some basic questions about yourself, to access the My MS My Needs survey.

If you’d prefer a paper copy of the survey, you can request one by getting in touch with our Supporter Care team by email at supportercare@mssociety.org.uk, or by phone on 0300 500 8084.

The survey is also available in Welsh, large print, and easy to read. And if you would prefer to complete the survey over the phone, you can call us on 020 8438 0700.

Further reading

Update on the ‘Vitamin D levels in people with MS’ study

Thank you so much to everyone participating in the ‘Vitamin D levels in people with MS’ study! We are so pleased at the level of interest this study has generated from all across the UK. We have had over 1700 participants enrol and complete a questionnaire.

Our partners at Queen Mary University London will be sending out 500 sampling kits to those on the next phase of the study. Around a half of all kits should be with have arrived with you with the remaining half being sent out imminently.

This study is being organised by Dr Ruth Dobson at the Wolfson Institute of Preventative Medicine, Queen Mary University London. It is funded by the MS Society of Great Britain. Further information about this study can be obtained by contacting Polly Rawlinson on telephone no 0207 882 5698 or email p.rawlinson@qmul.ac.uk.

Are people living with MS in the UK vitamin D deficient?

The Importance of Patient and Public Involvement in Medical Registries.

The United Kingdom Multiple Sclerosis Register has been enjoying a recent suite of high profile endorsements, emphasising the importance of involving people with multiple sclerosis (MS) to progress medical research.

The UK-based, Association of Medical Research Charities (AMRC) lists the UK MS Register as being one of the leading UK data patient registries. The AMRC highlighted the innovative way in which the UK MS Register is being used to lower barriers to research, drive efficiency and reduce costs. The full article which features a case study on the MS Society and the UK MS Register is available here http://bit.ly/2KmhbZs .

 

Since it was launched in 2011 the UK MS Register, based at Swansea University, has been funded and championed by UK charity, the MS Society. As part of the charity’s involvement programme, the MS Society promotes a model of collaboration by engaging people with MS in the charity’s long-term organisational vision, whose goal is for everyone to live a life free from the effects of MS.

The register links MS researchers to a large community of people with MS via three mechanisms;

  1. Participants are asked to complete a series of questionnaires every six months.
  2. Participants can also consent to have their medical records securely linked to the register and their questionnaires.
  3. Other clinically collected data can be also be linked to the register. For e.g. GP system data.

This creates an incredibly rich data source. Numerous analyses, performed by the Wellcome Trust and several other large medical research charities, have demonstrated an overwhelmingly positive public attitude to contribute their information to medical registries.

Dr Susan Kohlhaas, Director of Research at the MS Society, said: “We’re driving research into better treatments and care, and the UK MS Register is an integral part of that process. Most importantly, it helps us more fully understand what it means to live with MS in the UK today. Our research priorities are set by people living with the condition, and the Register provides important insights into what they want, including how to stop disability progression.”

The MS International Federation, ‘a unique global network of MS organisations, people affected by MS, volunteers and staff from around the world’ have also commended our work. In a recent article the federation shines a spotlight on some of the largest and most impactful registries from around the world. The full article presents a case for putting people with MS at the heart of research and how registers such as the UK MS Register are instrumental in this… https://bit.ly/2ROxIwg .

To find out more about the register please follow this link to our website https://ukmsregister.org/  and check out our publications section https://ukmsregister.org/Research/Publications to the kind of research resulting from this the project.

Merry Christmas from the UK MS Register Team!

The UK MS Register team would very much like to wish you all a Merry Christmas!

We would also like to take this opportunity to introduce you to Katie Tuite-Dalton’s maternity leave cover, Chris Roberts, who will be taking on the role of Communications Officer during this time.

Prior to this role, over the course of the last 10 years, Chris has worked at Cancer Research UK and Marie Curie in community engagement type roles and before that studied Business Studies here at Swansea University.

Throughout 2018 we’ve been busy here at the UK MS Register; we’ve developed and launched a new website to make the content clearer and we’ve added the ‘My Feedback Report’ which provides you with a useful snapshot of the information you’ve uploaded. We’ve developed new working relationships leading to exciting new studies involving vitamin D and physical function levels. Plus, we have grown our partnerships with NHS hospitals and now have 45 clinical sites that are able to feed information directly into UK MS Register.

The Vitamin D study questionnaire is still open for a few more days if you haven’t already completed it. More information about the study can be found below and on the UK MS Register website.

Thank you for your involvement this year and we look forward to your participation in 2019 and wish you all a very Merry Christmas and a Happy New Year!

Are people living with MS in the UK vitamin D deficient?

We are excited to announce that our newest study is open to recruitment! For this study we are working with our colleagues at Queen Mary University London, this study will be looking at vitamin D levels in the UK MS population. We know that vitamin D is one of the top research priorities for people living with MS. We hope the results from this study will inform us about the vitamin D status amongst the population and help us understand the factors that influence it. This information can be used to help design future vitamin D randomised control trials – so it is important that we get it right!

This study is a new kind of study for the MS Register – after answering questions via the Register, the 500 people who are selected to take part will receive packs through the post from Queen Mary University London. These will contain kits to allow people with MS to send us a finger prick blood spot and cheek swab, so that we can test blood vitamin D levels. Because we are doing everything using the Register and then via post, this means that you can take part in a research study without needing to travel – it all takes place in the comfort of your own home.

We are asking that each person with MS invites a friend to join them in this study, someone who is the same sex, similar age and lives nearby. Your friend will serve in our matched control group and allow us to look at differences between the people with MS and people without MS.

What does taking part in this study actually involve?

Firstly, we have a brief questionnaire which is filled out online via the MS Register. This will look at how much vitamin D people with MS are taking, and things that might affect vitamin D level. The more responses we have to this, the better idea we will have about what is happening across the UK.

From these respondents we will select 500 people to take part in the second part of the study. These participants will be the one who receive the finger prick and cheek swab sampling kits for themselves and their nominated friend. We need to get people from all over the UK and with different types of MS, so that we can look at the whole picture.

Once these are returned to us we will use these samples to look at levels of vitamin D and the genetic factors that can influence it. We are carrying this study out over the course of a year – so please don’t worry if you don’t hear from us right away! Even if you aren’t selected as one of the 500 participants to receive a sampling kit your participation is appreciated. ALL of the information we get from participants completing the survey will be used to help us report on the current status of vitamin D in people with MS.

That’s it – there are no visits to meet our researchers. There will of course be feedback on the results of the study on the Register.

We are looking to learn as much as we can about all people living with MS across the UK. We are hoping to hear from all over- from Land’s End right the way to John o’ Groats, from the largest cities to the smallest towns.

Interested?

If you are interested in finding out more about this study please visit here to find out more information.

MS SMART: FIRST ‘3 IN 1’ MS TRIAL COMPLETED

FIRST ‘3 IN 1’ MS TRIAL COMPLETED

Researchers have completed a clinical trial on MS in which 3 different drugs were tested at the same time instead of 1 at a time – a world first in progressive neurological disease research.

Funded by a partnership between the Medical Research Council and the National Institute for Health Research and MS Society UK and National MS Society (US), the ‘MS-SMART’ trial, taking place at a number of UK sites including UCLH, tested the safety and efficacy of 3 repurposed drugs (used to treat other conditions) in 445 people with secondary progressive MS – a later stage and currently untreatable form of the condition. All three drugs had been selected based on promising effects in experimental and pilot human studies.

The 3 drugs in this study were not found to be effective – but researchers said the trial has broken new ground and established a benchmark for future trials not only for MS but also other neurodegenerative disorders such as the Dementias.

The research team and funders would like to thank all the participants and their families for their time, commitment and energy in taking part in the MS-SMART trial. The team would also like to thank all the investigators and trial centres around the UK for being part of this fantastic project and making it happen.

 

FURTHER INFORMATION
Matt Chorley – National Institute for Health Research University College London Hospitals Biomedical Research Centre:
m.chorley@ucl.ac.uk / 0207 679 5291

 

Guest Questionnaires

Oulatest collaboration is to looking at Fatigue and Physical function, working with Merck KGaA 


What? We are looking to better understand the burden associated with MS symptoms, including fatigue, including fatigue and  its effects on your physical function and any issues you have with day to day activities’

 

Why? The information you share will provide important insights on the experience of fatigue and and its effects on physical function. This, in turn will feed into the development and testing of new questionnaires that can improve how such impacts are measured in individuals with MS, internationally.

This means that you will not only be contributing to a study looking at the effects of MS on lives in the UK but also how this subject is looked into in the future.

How? Everyone on the MS Register will be given the chance to take part in this study beginning in September 2018. The study involves answering a set of questionnaires immediately, then at a few other intervals throughout the year, after one week, after 6 months and then at one year. Completing the surveys in this research requires approximately 40 minutes.

Win an iPad! As a token of appreciation to study participants, Merck are giving away four iPads. You will be automatically eligible to win one by completing this research, and your chances of winning increase with the number of assessments completed. Four draws will be made, during the research, and the winners will be notified at the end of the research next year.

Merck KGaA is a leading science and technology company in healthcare, life science and performance materials. Merck is currently developing an oral drug for treating MS, which is currently in phase II, which adds to two other drugs already available to patients.

The MS Register asks regular questionnaires so that we can start to build a picture of your MS over time. We also work with Researchers across the UK and wider and sometimes they ask us to ask you their own questionnaires. Requests to work with us are taken through a strict application and governance procedure and are only accepted if the projects are deemed to be a relevant and scientific research question.

The New Look MS Register Website

Its here.

The all new version of the MS Register website is finally ready.

Three reasons to go to www.ukmsregister and log in

  • Much more interactive: see what you have already told us, easier to update.
  • The option to see your previous responses and the option to downloaded them
  • More information on the research generated so far by people on the MS Register

And lots more…. including asking you the main questionnaires every six months instead of every three.

To log on/return for the first time;

As part of our new security measures you will be asked to choose a new password that is more complicated (at least six characters long, at least one uppercase character, one number and one special character)

You will then be asked to let us know exactly what type of communications you would like from us for example – do you want to hear about clinical trials or to receive our newsletter? Also to let us know if you want to see your feedback.

The next screen you will see is your ‘Hub’ page where you can check all of your information is correct, see any questionnaires that you have waiting and your feedback if you have opted in to see this.

Other new content includes;

Apart from being all about YOU meaning you can use the new site to not only contribute to research about MS in the UK but to also keep a log of your MS, there are a couple of brand new sections to the website:

  • Research section – Information on research generated so far which helps demonstrate the point of contributing to the Register and adding to the growing body of data.
  • NHS Hospital pages – Information about the hospitals that we are working with and how a hospital can get involved.

So please go ahead, join us or rejoin us and help Make Sense of MS

We hope that you enjoy the new site and we are always open to new ideas and comments. This new design is guided by people with MS during feedback sessions and also communication via the internet. Please get in touch if you have suggestions, comments or good ideas!

 

 

Ocrelizumab (Ocrevus) recommended by NICE for relapsing MS

Ocrelizumab (drug name Ocrevus), a new treatment for relapsing remitting MS has been recommended by NICE. Originally NICE had made a draft recommendation against the new drug, but changed their minds after feedback from a number of patients and other stakeholders.

It should be available on the NHS in England and Wales within the next 3 months for people who have Relapsing MS and are unwilling or unable to take Alemtuzumab.

See the MS Society’s article for more information 

The UK MS Register publishes a new paper!

Our latest paper looks at how people on the website report their MS compared to the supplied clinical information – the answer is very accurately! Well done everyone!

A scientific criticism of the  MS Register is how can we guarantee that our  participants  who are on website answering questionnaires, have a confirmed diagnosis of MS from a Neurologist?  While people’s answers have been used countless times for internal and guest (other Universities/researchers)research and published in many journals, there is always the question – How representative of the UK MS population is the MS Register online population?

Comparing Data

Luckily we work with over 43 NHS hospitals  across the UK who consent patients to the participate in the clinical side of the MS Register and then provide us with information about their MS.

We looked at characteristics from this population, and characteristics from the online population and analysed the results. for example, we found them to be closely matched for mean age at diagnosis (clinical = 37.39, portal = 39.28) and gender ratio (female %, portal = 73.1, clinical = 75.2). For those patients who are both consented at a hospital and also answer questionnaires online,  we were also able to look at what the clinical staff have recorded and what patients have told us on the MS Register -these matched well.

Conclusions of the Research

Self-reported information from participants on the UK MS Register looks very similar to a clinically supplied population.This means that the MS Register can be utilised as a representative group for Research.

Thank you everyone and well done!

Here is a link to the paper 

 

 

 

 

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 

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0193407

 

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.

https://www.mssociety.org.uk/ms-resources/genes-and-msfactsheet

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

  • 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.

https://www.nhs.uk/Livewell/smoking/Pages/Motivateyourself.aspx

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 contact@ukmsregister.org 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:  https://www.youtube.com/watch?v=iKksmOfE_Lk

If you need any further information please email contact@ukmsregister.org

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: http://bit.ly/1Mv8N1M

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: domenico.plantone@nhs.net or call 07572898453.  Visit the MS-Smart website: http://bit.ly/1Mv8N1M

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 ms-cramms@nottingham.ac.uk  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.(www.progressivemsalliance.org).

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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.

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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: www.ukmsregister.org