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

Published 18/02/2019 13:45:32

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. We are now starting to roll out our sampling … Continue reading "Update on the ‘Vitamin D levels in people with MS’ study"

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The Importance of Patient and Public Involvement in Medical Registries.

Published 04/02/2019 15:35:25

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 … Continue reading "The Importance of Patient and Public Involvement in Medical Registries."

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Merry Christmas from the UK MS Register Team!

Published 18/12/2018 10:57:31

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 … Continue reading "Merry Christmas from the UK MS Register Team!"

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

Published 23/11/2018 11:51:18

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 … Continue reading "Are people living with MS in the UK vitamin D deficient?"

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Published 12/10/2018 14:15:57

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 … Continue reading "MS SMART: FIRST ‘3 IN 1’ MS TRIAL COMPLETED"

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Guest Questionnaires

Published 12/09/2018 11:26:28

Our latest 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 … Continue reading "Guest Questionnaires"

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The New Look MS Register Website

Published 02/08/2018 17:33:15

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 … Continue reading "The New Look MS Register Website"

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Ocrelizumab (Ocrevus) recommended by NICE for relapsing MS

Published 22/06/2018 15:02:33

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 … Continue reading "Ocrelizumab (Ocrevus) recommended by NICE for relapsing MS"

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The UK MS Register publishes a new paper!

Published 01/06/2018 14:54:49

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 … Continue reading "The UK MS Register publishes a new paper!"

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Do people with MS want to know their Prognosis?

Published 03/04/2018 11:10:33

  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 … Continue reading "Do people with MS want to know their Prognosis?"

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

Published 03/04/2018 11:06:32

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

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Ask the Register: Family Prevalence and MS

Published 01/02/2018 15:53:30

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 … Continue reading "Ask the Register: Family Prevalence and MS"

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Ask the Register: Vitamin D and MS

Published 01/02/2018 15:24:50

“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 … Continue reading "Ask the Register: Vitamin D and MS"

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Smoking and MS

Published 01/02/2018 15:17:20

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 … Continue reading "Smoking and MS"

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Partner sites

Published 01/02/2018 15:16:42

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 … Continue reading "Partner sites"

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Why should I join the MS Register?

Published 01/02/2018 15:15:56

Neil Forbes explains why as a person with MS he has joined the MS Register and continues to log on and answer his questionnaires. You can watch the video here:

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Happy New year!

Published 04/01/2018 11:13:44

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 … Continue reading "Happy New year!"

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Why be part of the MS Register?

Published 28/07/2017 10:58:06

Neil speaks about why being part of the MS Register is important to him.

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A little experiment

Published 16/03/2017 12:20:54

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 … Continue reading "A little experiment"

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Online Web EDSS Test

Published 14/12/2016 12:20:03

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 … Continue reading "Online Web EDSS Test"

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Congratulations to our lucky iPad winner!

Published 02/11/2016 15:07:14

Congratulations to our first lucky iPad winner…we have posted these goodies out today! Thank you for completing our questionnaires and your continued support.  

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Nutrition, Activities of Daily Living & Fatigue questionnaires

Published 02/11/2016 13:54:54

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 … Continue reading "Nutrition, Activities of Daily Living & Fatigue questionnaires"

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Share data with your NHS Team

Published 15/07/2016 13:58:09

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 … Continue reading "Share data with your NHS Team"

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Recruitment is well underway for the MS-SMART TRIAL

Published 23/02/2016 08:39:53

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 … Continue reading "Recruitment is well underway for the MS-SMART TRIAL"

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Recent Questionnaire on Cognitive Rehabilitation for Attention and Memory in MS

Published 18/12/2015 16:11:13

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 … Continue reading "Recent Questionnaire on Cognitive Rehabilitation for Attention and Memory in MS"

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Progressive MS and Physiotherapy

Published 24/07/2015 15:13:37

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 … Continue reading "Progressive MS and Physiotherapy"

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MS Frontiers 2015

Published 24/06/2015 14:17:47

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.

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UK MS Register Cake Break 2015

Published 28/05/2015 15:13:53

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 … Continue reading "UK MS Register Cake Break 2015"

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Last chance to give us your opinion on Prognosis and MS

Published 22/05/2015 11:25:02

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 … Continue reading "Last chance to give us your opinion on Prognosis and MS"

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Local group present us with cheque for MS Society

Published 06/05/2015 14:36:01

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 … Continue reading "Local group present us with cheque for MS Society"

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