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

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1 Newsletter April 2014 Page Good news! Next stage funding: What this means for the Register What this means for MS research What this means for you Other project news Events Contact Good news! Welcome to the spring edition of the UK MS Register newsletter. Sorry we have been a little bit late getting this newsletter to you but we have some good news - we have successfully been awarded three more years of funding from the MS Society! Rod Middleton Project Manager This issue looks at what this next stage of funding means for the UK MS Register, MS Research and You. Have you logged on and updated your details recently? Go to ukmsregister.org to answer the latest questionnaires! 1

2 Next stage funding: What does this mean for the Register? This is a massive change for the MS Register. We are going to move from being a prototype, to being a fully functional Register. We have done some excellent research up till now (thanks to you) but now we can really push forward. The most obvious change to many people will be that we are going to add many more clinical sites than the four we have had up until now. instruments that is used to measure the physical and psychological impact of MS on people. You may have been asked this questionnaire by your clinician, or MS nurse, and you hopefully answer it regularly on the Register website (called Your day-to-day activities ). Professor Hobart will make sure that the Register continues to develop in the most successful and appropriate way to ensure that it is useful and relevant to clinical staff as well as to researchers and people with MS. We will continue to encourage anyone with MS in the UK to log onto our website and answer questionnaires about their MS so if you know someone with MS who hasn t already joined, please encourage them to! For those of you who are already part of the Register it s even more important to return regularly. Your responses help us to keep the website interesting, interactive and relevent. We will expand our clinical data collection by working with new clinical sites (hospitals and MS treatment centres) across the UK. Keep a lookout to see if we come to a site near you! We now have a clinical lead on the Project team! Consultant Neurologist, Professor Jeremy Hobart from Plymouth Hospitals NHS Trust has joined the UK MS Register team to provide input from a clinical perspective. He is responsible for the creation of the widely used patient questionnaire MSIS- 29, which has become one of the main We will also be working closely with Professor Hobart and people with MS in the Plymouth area. ukmsregister.org Data provided by you from the website Professor Jeremy Hobart Consultant Neurologist In case you don t know, here is how the Register works: Anyone with a confirmed diagnosis of MS in the UK can join the Register. Data is gathered from two main areas the website and hospital records (see the picture below). Both areas are equally important and help generate crucial research, but being involved in both parts creates the richest, highest quality data that researchers can then study to find out more about MS. hospital records Data from your clinician and your consented record 2

3 Next stage funding: What does this mean for MS research? If a researcher has a question or wants to submit a questionnaire, rather than spend a long time getting enough participants together and asking questionnaires, there is the potential to use the MS Register to either host the questionnaires for them, or recruit a specific group of participants. All partnerships will go through the appropriate governance and Ethical approvals required. How the Register has helped MS researchers Our recent collaboration with Glasgow Caledonian University has been featured in our previous newsletters. Their Intermittent Self Catheterisation questionnaire was deployed as a guest questionnaire on the UK MS Register website last year. The researchers at Glasgow Caledonian University were extremely happy with over 8000 answers from around the UK to their questionnaires in just three months. Doreen McClurg, the lead on the study told us, I do not know of any other way we could have obtained such numbers and this will make it the largest survey of its kind in the MS population. Another example is how the Register has worked to help colleagues from Institute of Psychiatry, King s College London to recruit people for their study on how people with MS view pain. Anthony Harrison, a researcher in the Institute of Psychiatry, King s College London said: Recruiting research participants via the MS UK Register was an easy and efficient means to obtain a large amount of data for our survey asking people with MS about their experiences of pain. We were extremely pleased to receive 195 full questionnaires from the Register in a three-week period. In the fast-moving world of research and culture of tight deadlines, we feel this level of efficiency has the potential to revolutionise how we obtain data in a more timely fashion. We certainly intend to use this service in the future. If you haven t yet and would like to answer this questionnaire and help them out, then please visit their survey website - Percentages of those who replied that have used ISC, are actively using ISC and those who have stopped 3

4 Next stage funding: What does this mean for you? Examples of feedback on the website Your regular contributions are creating an extremely important repository of information which can be used by researchers to help make sense of MS, influence policy and improve care for people with MS in the UK. We would like to say a big thank you for those of you who have been making the effort to return when we prompt you to complete your questionnaires it wouldn t be possible without you! We are constantly improving the website and try to make it as user friendly as we can. Any feedback is greatly appreciated, so us if you have any ideas. We have recently added some new features in response to some of our participant s suggestions. Now, when you log on you will be able to access a results page that shows what you have answered compared with other people on the Register. The security and confidentiality of your data is of the highest importance to us and therefore we ensure that we use the highest levels of encryption and security throughout its collection, storage and use. All data that researchers have access to is anonymised and nothing identifiable is ever released. Other project news New Faces! As the project is in an all new stage, we thought it would be a good idea to refresh our website and printed materials with some new faces. Thanks to members of our local MS Support group the Twocann Tuesdays group - who meet once a month in Swansea - we managed to recruit some willing volunteers to come along to the University for a photo-shoot. We had a really fun day and they were all brilliant thank you very much everyone who attended! Look out for their appearances on our new material and on the website! 4

5 Events Cake Break Visit from the MS Society On the 10th April, Michelle Mitchell, Chief Executive of the MS Society, Ed Holloway, Programme Director for Strategy and Impact, Nick Rijke, Executive Director of Policy and Research and John Miller Trustee and Chair of the MS Register steering group came to Swansea to visit the UK MS Register Office, met the team and talked about the next steps for the Register. We were very pleased to have them all with us in Swansea! MS Life 2014 We are attending MS Life and have some new goodies to give away! If you are going to be there, 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 us any questions about the Register or to suggest some ideas. Don t worry if you can t make it, we will be having some postal giveaways over the next few months - keep an eye on your s! Straight after MS Life we will be holding another Cake sale at Swansea University as part of the MS Society s national Cake Break. Last year we raised over 200 and even managed to bake some UK MS Register cupcakes! MS Research Charity open day, Bristol The team then heads to Bristol to the charity MS Research, Treatment and Education s Meeting point first ever open day on the 30th April. If you are interested in popping down and learning more about MS research in Bristol, please abi.wiltshire@ms-research.org.uk RIMS In June, members of our team are attending the RIMS (Rehabilitation in MS) conference which is run in partnership with the MS Trust and University College London Hospitals NHS Foundation Trust. The conference offers an opportunity for delegates to learn, share best practice, network, and hear key clinical and opinion leaders in multiple sclerosis from Europe and beyond. 5

6 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 of Medicine, Swansea University, Swansea, SA2 8PP 6