News

These pages will keep you informed with all the things that the MS Register discovers from YOUR answers. You’ll find links to the research we have carried out, information about us, links to other useful sites and will also keep you up to date with what is happening with the UK MS Register Project.

Previous Newsletters

January2013

April2013

July2013

November2013

April 2014

November2014

June2015

April 2016

December 2016

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!

Published Thu, 16 Mar 2017 13:20:54

Online Web EDSS Test

We have launched our new online Web EDSS test on our portal.  We are trying to see if a self-administered one produces the same or similar result analogous to what a clinician produces.  This test should take around 15  minutes to complete.  You will need to log in to access it the web EDSS.  Try it now by clicking here: https://ukmsregister.org/Portal/Home

Published Wed, 14 Dec 2016 13:20:03

Congratulations to our lucky iPad winner!

Congratulations to our first lucky iPad winner…we have posted these goodies out today!

Thank you for completing our questionnaires and your continued support.

 

Published Wed, 02 Nov 2016 15:07:14

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.

Published Wed, 02 Nov 2016 14:54:54

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

 

 

 

Published Fri, 15 Jul 2016 13:58:09

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!

Published Tue, 23 Feb 2016 09:39:53

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

 

Published Fri, 18 Dec 2015 17:11:13

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).

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.

glasgow

Published Fri, 24 Jul 2015 15:13:37

MS Frontiers 2015

We are excited to be attending and presenting at MS Frontiers next week. This conference is a key opportunity for neurologists, clinicians, and allied health professionals to present their latest work, share ideas and discuss key challenges.

http://www.mssociety.org.uk/ms-events/ms-frontiers-2015

Published Wed, 24 Jun 2015 14:17:47

UK MS Register Cake Break 2015

The UK MS Register Team held their annual Cake Break sale as part of World MS Day  on the 27th May, In Swansea University. The sale of the cakes which were made by the team, their families and colleagues in the College of Medicine, made £249 – the most raised in the three years the team have held the event.

Thanks to all the bakers!

IMG_1773

Published Thu, 28 May 2015 15:13:53

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

Published Fri, 22 May 2015 11:25:02

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!

 

Published Wed, 06 May 2015 14:36:01

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.

LOG IN 

Published Mon, 27 Apr 2015 15:38:08

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

Published Mon, 23 Mar 2015 17:19:22

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

http://www.mssociety.org.uk/ms-research/research-blog/2015/03/ms-register-needs-you

 

Published Mon, 23 Mar 2015 16:28:45

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 mb4e11@soton.ac.uk or the MS Register team contact@ukmsregister.org

southampton

Published Thu, 19 Feb 2015 17:34:52

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!

wigs

Published Fri, 17 Oct 2014 13:34:10

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:  http://www.mssociety.org.uk/ms-news/2014/09/progressive-ms-22-new-research-projects-funded

 

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

Published Thu, 18 Sep 2014 11:29:57

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 www.ukmsregister.org 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 contact@ukmsregister.org if you need any help or have any questions.

 

 

Published Fri, 29 Aug 2014 10:21:35

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

Published Thu, 14 Aug 2014 15:11:53

Have you seen Shift MS’ You Tube channel?

Watch their fantastic videos to find out more about MS, get your questions answered and hear different experiences from around the community.

Shift.ms is the social network for people affected by Multiple Sclerosis (MS).

http://shift.ms/

https://www.youtube.com/user/shiftdotms/featured

Published Thu, 19 Jun 2014 10:34:08

The 5th MS Research day, London 14th June

The UK MS Register is going to the 5th MS Research day in London this weekend. The event is hosted by UCL Partners and is an opportunity for people with multiple sclerosis (MS), family, friends and carers to get an update on current advice and guidance for self-management, details of what is happening in research and meet MS Health Care Providers in an informal setting.

London, Saturday 14th June

If you are interested in attending please go to their website
http://www.uclpartners.com/events/ms-research-day

Published Thu, 12 Jun 2014 15:04:31

Yum Yum Cake Break

The UK MS Register held a Cake Break at Swansea University where we are based on the 30th April. We raised over £200 and made a lot of students and staff happy!

Cake Break 2014
Cake Break 2014

Published Wed, 11 Jun 2014 08:05:32

MS Life 2014

We are attending MS Life 2014 and have some new goodies to give away! If you are going to be there too, then come along to our stand, log on to show us that you are an ‘Active user’ and receive a free thank you gift.

It’s also a good chance to meet the team and ask  any questions about the Register or even suggest some ideas.  As part of the Emotional Well-being lecture, Associate Professor Kerina Jones, lead researcher from the MS Register is also talking about Register data on anxiety and depression levels in people with MS. (Saturday 26th April,14:00-15:00 in MS Life theatre, MS Life 2014)

Don’t worry if you can’t make it, we will be having some postal give-aways over the next few months – keep an eye on your emails.

Published Thu, 24 Apr 2014 10:20:54

How do you see your MS?

Nine People with MS work with photographers to depict each symptom in a single image.

Great short film from Australia.

Published Wed, 02 Apr 2014 15:22:16

Other interesting blogs

Here are a couple of other interesting Blogs on MS

MS Society Research Blog – keeps you up to date with Research in the MS world

MS Research blog spot – Barts and The London Neuroimmunology Group keep you updated you on the latest research in MS with an emphasis on the research we are involved in.

Published Wed, 02 Apr 2014 15:21:57

Welcome to the UK MS Register blog!

These pages will keep you informed with all the things that the MS Register discovers from YOUR answers. You’ll find links to the research we have carried out, information about us, links to other useful sites and will also keep you up to date with what is happening with the UK MS Register Project.

Published Wed, 02 Apr 2014 15:18:10