News

A lecture from the MS Society

Published 18/05/2021 13:34:47

A free lecture as part of the MS Society’s Stop MS Appeal will take place virtually on Wednesday 2 June from 6.30pm. The lecture is for anyone who is keen to find out about research the MS Society is funding and also the new exciting trial that could transform the way treatments for Progressive MS are tested.  The … Continue reading "A lecture from the MS Society"

Read more

Published 12/05/2021 15:11:27

Fatigue and MS Maggie, a participant on the MS Register recently reviewed a scientific paper for us. It was published in ‘Multiple Sclerosis and Related Disorders’ and was created in collaboration between Birmingham University and the UK MS Register, looking at Fatigue and MS. Fatigue is a common problem for MS patients. How the management … Continue reading ""

Read more

MS Register Spring Questionnaire window

Published 15/03/2021 16:22:42

A short video which explains what is in this Spring Questionnaire window and some of the results that have come in so far.

Read more

MS Register Covid-19 Vaccination Questionnaire update: 25th Jan 2021

Published 29/01/2021 16:25:34

A short video update on answers so far to the Covid-19 Vaccination Questionnaire

Read more

Covid-19 Vaccination opinion update – 8th January 2021

Published 10/01/2021 16:10:30

Read more

MS Register Covid-19 Vaccination Questionnaire update: 17th December 2020

Published 17/12/2020 16:14:43

Rod, Project Manager provides an update on the data that is coming in from the Vaccination Opinion Questionnaires

Read more

UK MS Register Update on Covid 19 Questionnaires: Vaccination Opinion.

Published 12/12/2020 16:08:57

Read more

Monitor your MS and share with your health care team

Published 23/09/2020 10:50:03

See your Feedback on the MS Register. On the ‘My Profile’ page make sure you have choosen the option to ‘see my feedback’ Then on ‘my Hub’ page you will see ‘My feedback report’ on the the top right. You can down load it to a pdf and print or send it to your Health … Continue reading "Monitor your MS and share with your health care team"

Read more

Update for Fatigue and Physical Function Study

Published 23/09/2020 10:06:33

First of all, a big thank you for your participation in the Merck study, and for sticking around for the last few months until now! As we get into the final phase of data collection, we thought of sharing some important updates about the study with you. First, this study has made an enormous contribution … Continue reading "Update for Fatigue and Physical Function Study"

Read more

MS and Mood during the COVID-19 pandemic

Published 03/07/2020 16:34:15

Researchers from the Nottingham MS Research Group are working with colleagues at Imperial College London, Swansea University and the UK Multiple Sclerosis Register to examine the effect of COVID-19 on people living with MS. The project includes a sub-study to explore how COVID-19 is affecting the mood and psychological wellbeing of people with MS. This … Continue reading "MS and Mood during the COVID-19 pandemic"

Read more

COVID-19 and MS

Published 22/04/2020 16:42:51

The MS register and the MS Society are asking people with MS to tell us more about the impact the current coronavirus pandemic is having on their lives. Over 3,500 of you have already completed a survey asking some questions about your treatment and changes you may be making to your behaviour. We would also … Continue reading "COVID-19 and MS"

Read more

People with MS in the UK are providing vital information on Covid-19

Published 09/04/2020 14:58:09

The MS Society is looking for people with multiple sclerosis (MS) to provide vital information through the UK MS Register on how coronavirus is affecting them. MS damages nerves in the body and makes it harder to do everyday things, like walk, talk, eat and think. Having MS alone does not increase your risk of … Continue reading "People with MS in the UK are providing vital information on Covid-19"

Read more

THE IMPACT OF COVID-19 IN MULTIPLE SCLEROSIS: A SUBSTUDY OF THE UK MS REGISTER

Published 30/03/2020 14:06:24

This is the Blog published on the Barts Multiple Sclerosis Research Blog by The UK MS Register Clinical Lead, Dr Richard Nicholas. We need to understand more about COVID-19 urgently, and you can help. COVID-19, the coronavirus infection, is devastating the health and jobs of millions around the world, and is now in increasing in the … Continue reading "THE IMPACT OF COVID-19 IN MULTIPLE SCLEROSIS: A SUBSTUDY OF THE UK MS REGISTER"

Read more

Exciting Updates for The Ongoing Merck Study

Published 20/03/2020 09:05:30

In autumn of 2018, we launched a study in collaboration with Merck Healthcare KgaA, which seeks to provide a better understanding of the burden associated with MS symptoms and day-to-day impacts and how best to assess these. In our September 2019 newsletter/update, we share with you that two new patient-friendly self-assessment questionnaires for fatigue and … Continue reading "Exciting Updates for The Ongoing Merck Study"

Read more

Coronavirus (COVID-19) and MS

Published 17/03/2020 14:27:16

We understand that you might be feeling worried about the Coronavirus and your MS. Here is a general information page with plenty of useful links for advice and suggestions here https://www.ukmsregister.org/coronavirus  We have put a questionnaire on your Hub Page because it is very important to collect data on how Coronavirus is affecting People with MS. Additionally … Continue reading "Coronavirus (COVID-19) and MS"

Read more

The Hidden Costs of multiple sclerosis (MS) 

Published 10/02/2020 11:39:57

New research has shown for the first time what people with peoplewith MS have had to spend themselves to maintain an independent standard of living. The study from Swansea University Medical School has found that people with MS and their families are having to fund up to 75% of non-medical costs from their own pockets. Previous research in this area has only looked into the cost of drugs and … Continue reading "The Hidden Costs of multiple sclerosis (MS) "

Read more

Belfast Patient Experience Questionnaire

Published 06/02/2020 16:11:27

MS is a complex and challenging condition for many if not all patients. A range of healthcare professionals can play key roles in treatment and management. We are interested in establishing across the UK just who patients see when attending outpatient clinics and whether they feel that others should be involved to meet their needs … Continue reading "Belfast Patient Experience Questionnaire"

Read more

A trial-ready community

Published 06/02/2020 13:26:29

The Stop-MS appeal by the MS Society aims to be in the final stages of testing treatments (to slow down or stop disability progression) for everyone with MS by 2025. They plan to raise £100 million and part of this funding will go towards the development of an “MS Trials Platform”. The ambition of the … Continue reading "A trial-ready community"

Read more

Flexibility of thoughts

Published 06/02/2020 13:26:22

We know MS can cause spasticity in your body, maybe this can happen with thought processes too. Our colleagues in the Institute of Mental Health in the University of Nottingham are looking into whether there could be justification for trialing a therapy for people with SPMS which aims to target ‘thinking inflexibility’ which can lead … Continue reading "Flexibility of thoughts"

Read more

How MS affects mood

Published 04/02/2020 15:52:27

Patient update: How multiple sclerosis affects mood I am Professor Dawn Langdon and with Dr Gurpreet Reen, have received a grant from the MS Society to use data from the UK MS Register to investigate mood in multiple sclerosis. We are both psychologists working at Royal Holloway University of London. As you know, people with MS are … Continue reading "How MS affects mood"

Read more

How sedentary is your lifestyle?

Published 28/01/2020 16:50:00

In recent years there has been a growing amount of research into sedentary behaviour  (large amounts of sitting and little physical exercise). The research is showing that there a many health risks associated with prolonged and excessive inactivity. The University of Birmingham is working to find out more about the types of activities people with … Continue reading "How sedentary is your lifestyle?"

Read more

Update on Vitamin D questionnaire

Published 28/01/2020 16:13:00

  Last year we hosted a questionnaire in collaboration with Queen Mary University of London. The study looked  at vitamin D levels in the UK MS population. Vitamin D is one of the top research priorities for people living with MS and results from this study will provide information about the vitamin D status amongst the … Continue reading "Update on Vitamin D questionnaire"

Read more

Participant Feedback on the MS Register: 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 Register: 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