Have you logged on and updated your details recently? Go to ukmsregister.org to answer the latest questionnaires!

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1 UK MS Register June 2015 Issue 7 What s inside? Page In this edition... The UK MS Register map Results Collaborations Events Contact In this edition... Focussing on collaboration, we are continuing to expand our partnerships with new hospitals and are starting to become a core part of MS research infrastructure in the UK. Rod Middleton Project Manager Congratulations - you are a very responsive group! When we host a new questionnaire on the Register website your answers flood in (thank you!). This is enabling researchers to get high response rates in shorter periods of time than they might if using more traditional methods, such as postal surveys. Additionally, because you live all over the country, your answers provide a more representative response than a study was confined to one locality. All of your answers add detail and richness to our understanding of what it is like to live with MS in the UK. Have you logged on and updated your details recently? Go to ukmsregister.org to answer the latest questionnaires! 1

2 The UK MS Register Map The UK MS Register is growing fast! We are now collaborating with more hospitals across the country. If you are treated by any of the hospitals below then you could have your medical records linked to your questionnaires, providing researchers with the most comprehensive data possible. If you would like more information, please get in touch using the contact details below. Map showing partner site locations and Register portal participant locations Our site locations: Royal Victoria Hospital in Belfast Queen s Medical Centre in Nottingham Morriston Hospital in Swansea Queen Square, University College Hospital London Shrewsbury and Telford NHS Trust Basildon and Thurrock University Hospital John Radcliffe Hospital, Oxford Southampton General Poole Hospital NHS Foundation Trust The Royal London Hospital, Whitechapel Partner site location Register portal participant location As you can see from the map, Register website participants are located across the UK. If you think you can help spread the word about the UK MS Register, to your friends or local support groups, then please get in touch and we will send you a pack with some leaflets and other goodies to help you. contact@ukmsregister.org Tel:

3 Your Achievements How many stars do you have when you log onto your dashboard on the UK MS Register? Each star is a completed questionnaire and there are a few of you with over 800 stars!! We would like to say thank you to everyone, but we would like to say an extra thank you to those of you who have 800 or more stars, so we will be posting out a small reward for being such dedicated participants. Results: Cladribine opinion poll In October last year we hosted a short opinion poll on behalf of Dr Klaus Schmierer from Queen Mary University of London & Barts Health, which aimed to find out the views of participants with relapsing remitting MS (pwrms) on a trial comparing a first treatment option or induction disease modifying treatments (idmt). Treatment with idmt is attractive as it combines high effectiveness with short treatment intervals. (Lemtrada) is associated with significant risks requiring long-term safety monitoring for side effects. The proposed trial would compare Alemtuzumab with a potential idmt drug that is not (yet) licenced for MS, called Cladribine. The aim of the trial would be to find out whether Cladribine works as well as Alemtuzumab while having a lower risk of adverse effects, as suggested by previous trials. Evidence suggests that treating pwrms early with an idmt can slow the progression of MS for pwrms. However, the only currently licensed idmt Alemtuzumab Dr Schmierer, proposed the two following questions to Register participants with Relapsing MS. 3

4 1) There has been a recent increase in the number of available disease modifying drugs for relapsing MS. Do we still need to conduct trials that would further expand the range of treatment options for relapsing MS? 2) Would you consider taking part in a trial to find out whether Cladribine works as well as Alemtuzumab and has a lower risk of adverse effects? Yes No Yes No Results In the space of two weeks, 822 people completed the questionnaire and here is what they said: Continue to conduct trials: 97% Yes Consider taking part: 51% Yes The results of this poll underline the importance of further drug trials for pwrms, and were reassuring in that a great deal of people would be willing to consider participation in a trial comparing two idmts although information provided to the people that answered the questionnaire was very limited at this stage. The results were included in a funding application to the National Institute for Health Research (NIHR) and will be valuable for further steps in exploring cladribine as an alternative idmt for pwrms. Dr Schmierer said We are very grateful for this amount of feedback in such a short space of time. If you would like to find out more about Dr Schmierer s group and their further plans you can contact him via k.schmierer@qmul.ac.uk 4

5 Collaboration Prognosis You may be one of the 3000 or more people who have answered the questionnaire on prognosis that we hosted in collaboration with University of Southampton for three months from February. What is a name? Do you have a specific term that you prefer to be referred by when reading articles about people who have with MS? Do you think a particular term is not snappy enough or is another term insensitive? Whilst we appreciate that people do not like to be labelled, it is necessary when academics, clinicians or journalists report ideas or results in social media, publications and articles. Prognosis is a term used to describe a prediction of the likely or expected development of a disease. People who understand their condition in more detail could have more control over their care and are better equipped to make informed choices about their treatment. This questionnaire attempted to understand how PwMS dealt with the uncertainty of their prognosis and to try to gather how existing channels of information and support could be improved. First of all thanks, the team at Southampton is very impressed! This high number of responses in such a short space of time 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 via post, would struggle to get this number of responses in this space of time. So to all of our participants who have answered thank you! We will let you know the results in the next newsletter. Professor David Baker Barts and The London School of Medicine and Dentistry Professor David Baker from Barts and the London School of Medicine and Dentistry wanted to find out what UK MS Register participants would prefer to be referred as, in both formal (scientific publications and grants), and informal settings (online, in social media etc.) The team at Barts plan to publish a scientific paper on the results and we will report back in the next newsletter and our blog as soon as the results are analysed. The team at Barts and the London Neuroimmunology Group have an online blog which reports on the latest research in MS: 5

6 Progressive MS and Physiotherapy The UK MS Register has 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. Evan Campbell University of Glasgow 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. ( 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 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. 6

7 Ground-breaking Clinical trial for Secondary Progressive MS is recruiting now MS SMART is a two-year trial that will test the safety and effectiveness of three different drugs against a dummy (placebo) treatment. These drugs are currently used for other conditions, but have the potential to protect nerves from damage which could ultimately stop or slow disability progression. The trial is looking at the following drugs, and will include 440 people with SPMS. Amiloride (licensed to treat heart disease) Fluoxetine (licensed for treatment of depression) Riluzole (licensed to treat Motor Neuron Disease) The following main criteria will be used: Between years old Have worsening secondary progressive MS (NOT primary progressive) EDSS 4.0 (maximum walk=500m) -6.5 (minimum walk=20 m with bilateral assistance) inclusive Not on disease-modifying drugs Not on Selective serotonin reuptake inhibitor already such fluoxetine [prozac] or citalopram Able to undertake MRI Be able to travel to the nearest centre Up to 15 trial sites in cities and towns across Scotland and England are involved, and participants will be monitored for two years using MRI scans and other clinical measures to test for signs of MS progression. If you would like more information about the trial, or to see if you are eligible, please visit the MS-SMART website: 7

8 Events MS 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. Feedback The UK MS Register Team in London for MS Research day Cake break The 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. It is very important to us to hear what you think of the Register. If you have any comments or suggestions about the website, then please get in touch with us using the contact details overleaf. We try to feedback results that we think you may find interesting, but if there is anything specific that you would like to see us reporting on, let us know. Upcoming events Frontiers We are attending the MS Society s 2015 MS Frontiers conference about the latest MS Research on 29th June where we have two presentations and an academic poster on display. This event is a key opportunity for researchers, neurologists, clinicians and allied health professionals to present their latest work, share ideas and discuss key challenges. Don t Forget! Remember to log onto the UK MS Register every three months to update your details! Let s make sense of MS 8

9 Any Questions? Have you got a question, problem or complaint? Do you want to talk about the Register with one of the team? Feel free to get in touch contact@ukmsregister.org facebook.com/ukmsregister twitter.com/ukmsregister UK MS Register Institute of Life Science 2, College Swansea of University Medicine, Swansea Medical School, University, Swansea, SA2 8PP 9