News

Participant Feedback on the MS Regsiter: 1 Year Since Website Relaunch

Published 25/09/2019 16:09:03

How long have you been a participant on the MS Register? Approximately 8 years How was it you came to be involved with the MS Register? Advert via Facebook – I think – sorry long time ago now Why do you feel it’s valuable to contribute data to the MS Register? I am 100% honest … Continue reading "Participant Feedback on the MS Regsiter: 1 Year Since Website Relaunch"

Read more

MSiDMT: An Electronic Cognitive Outcome Measure for MS

Published 19/09/2019 16:02:12

Read more

The Next Merck KgAA Survey is Available

Published 05/09/2019 14:40:12

Fatigue and Physical Function (with Merck KgAA) – Please continue completing this survey, previous responses have already contributed to anonymised data submitted to the FDA (US Food and Drug Administration) as part of the development of new MS drugs.  Continue completing to win an iPad! (Completion of EDSS also required) Survey available here… https://www.ukmsregister.org/MyMS

Read more

The Latest Window of Questionnaires is Now Open!

Published 05/09/2019 14:17:47

It’s that time again – the next window for completing questionnaires is open. As you know we ask our regular surveys every six months. Please continue to complete these as they are important for all our research. We also have the following guest questionnaire available for you to complete: Wellbeing & MS (with Exeter University). … Continue reading "The Latest Window of Questionnaires is Now Open!"

Read more

£1 Million Boost For Research Into Living With Multiple Sclerosis

Published 15/08/2019 10:11:31

The UK Multiple Sclerosis (MS) Register, based at Swansea University, has been awarded just over £1m investment from UK charity, the MS Society. The Register is a ground-breaking medical research study that seeks to collect information from people with the disease about what it’s like to live day-to-day with Multiple Sclerosis. Established in 2011, it … Continue reading "£1 Million Boost For Research Into Living With Multiple Sclerosis"

Read more

Thank you for completing My MS My Needs 3.

Published 12/08/2019 13:37:51

The UK MS Register would like to share with you a message from Caroline Howlett of the MS Society’s Research Network… ‘You have spoken! Over 8,000 of you completed this year’s My MS My Needs survey. As a Person with MS and lay member of the Research Network working with the survey team, I’d like … Continue reading "Thank you for completing My MS My Needs 3."

Read more

Imperial College London Drug Trial at Hammersmith Hospital

Published 25/07/2019 14:20:58

Division of Brain Sciences, Department of Medicine, Hammersmith Hospital Campus Burlington Danes Building, Du Cane Road, London W12 0NN. Telephone number: 0207 7594 2855 Version 10, dated 14/06/2019 IRAS 218514 REC 17/LO/0566 An experimental medicine study to validate the 18 kD translocator protein (TSPO) as a novel neuroimmunomodulatory target in multiple sclerosis Participant Information Sheet … Continue reading "Imperial College London Drug Trial at Hammersmith Hospital"

Read more

The MS Society Declares Future Funding for the Register

Published 12/07/2019 11:14:26

We are delighted to announce that the MS Society have agreed to continue their support for the UK MS Register. The current arrangement, due to expire in July 2019, has been renewed for a further 3 years which will see the Register through its 10th anniversary year in 2021 and on to 2022. Based at … Continue reading "The MS Society Declares Future Funding for the Register"

Read more

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