News

Association of British Neurologists (ABN) Annual Meeting 2019 Posters

Published 19/06/2019 14:05:10

The UK MS Register is constantly evolving in a bid to improve and expand our online platform for people with MS and our clinical partners. One important development that the MS Register is working on right now utilises a Natural Language Processing (NLP) computer program. NLP is designed to automatically recognise the text from any … Continue reading "Association of British Neurologists (ABN) Annual Meeting 2019 Posters"

Read more

Vitamin D Study – Latest Update

Published 20/05/2019 11:04:59

‘Vitamin D levels in people with MS’ study update Our partners at Queen Mary University of London, who are conducting this study have issued the following update… We want to thank all the participants and their friends who have so far taken part in our study ‘Vitamin D levels in people with MS. We have … Continue reading "Vitamin D Study – Latest Update"

Read more

MS Awareness Week: Generating Awareness at ‘Living Well With MS’

Published 24/04/2019 09:43:03

Over the course of the last month the MS Register team has been attending MS events organised by some of our clinical partners and funded by the MS Society. The first of these events took place on Friday 22nd March at Parc Y Scarlets stadium in Llanelli; home of the prestigious Scarlets rugby team. The … Continue reading "MS Awareness Week: Generating Awareness at ‘Living Well With MS’"

Read more

The Barthel Index questionnaire has been discontinued

Published 14/03/2019 11:41:13

If you’ve been completing questionnaires on our portal recently you may have noticed that the Barthel Index survey no longer appears. Our research has shown that this survey isn’t telling us anything that our other existing surveys aren’t. This research, presented at ECTRIMS, is summarised here –

Read more

UK MS Register Welcomes a New Analyst to the Team!

Published 11/03/2019 14:08:00

Elaine Craig Research Analyst Elaine will be working with the team to query the Register’s datasets for research questions, as well as ensuring the accuracy and completeness of the data, and documenting methodologies and procedures. Prior to this, Elaine worked with infectious disease data at the University of Oxford, managing and standardising diverse datasets in … Continue reading "UK MS Register Welcomes a New Analyst to the Team!"

Read more

MS-STAT2: A Secondary Progressive MS Study

Published 11/03/2019 14:02:36

The MS-STAT2 clinical trial has been designed to test the effectiveness of repurposed simvastatin in patients with secondary progressive MS (SPMS), to determine if the rate of disability progression can be slowed over a 3 year period. While treatments in the early stage of MS (relapsing-remitting MS, or RRMS) have become increasingly effective, there remains … Continue reading "MS-STAT2: A Secondary Progressive MS Study"

Read more

What Your Telling Us

Published 11/03/2019 13:58:30

11,143 of you have completed the questionnaire ‘My other conditions or comorbidities’. 18,418 other conditions or comorbidities have been reported. 3,464 have reported that they have no other conditions.    

Read more

UK MS Register Newsletter – March 2019

Published 11/03/2019 13:51:43

The latest edition of the Register’s newsletter should be hitting inboxes this week. UK MS REGISTER NEWSLETTER – MARCH 2019   Data Digest What is the UK MS Register? The UK MS Register is a ground-breaking study designed to increase our understanding of living with MS by capturing more real world data from people with … Continue reading "UK MS Register Newsletter – March 2019"

Read more

Questionnaire Window Now Open!

Published 01/03/2019 15:00:18

Every 6 months we ask you to complete a series of questionnaires through our online portal. The next window for completing questionnaires is now open. As well as our regular ongoing surveys  we also have some guest questionnaires available for completion. These include: My MS My Needs 3 The 2019 My MS My Needs survey … Continue reading "Questionnaire Window Now Open!"

Read more

My MS My Needs 3

Published 28/02/2019 09:11:03

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 … Continue reading "My MS My Needs 3"

Read more

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. Our partners at Queen Mary University London will be … Continue reading "Update on the ‘Vitamin D levels in people with MS’ study"

Read more

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."

Read more

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!"

Read more

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?"

Read more

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

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"

Read more

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"

Read more

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"

Read more

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"

Read more

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!"

Read more

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?"

Read more

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!"

Read more

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"

Read more

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"

Read more

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"

Read more

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"

Read more

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:

Read more

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!"

Read more

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.

Read more

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"

Read more

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"

Read more