Dom from ‘theMSGuide’ on YouTube interviews Dr Jeff Rodgers from the MS Register About Smoking and MS

Published 09/11/2021 15:41:44

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Never too late to quit smoking for people with Multiple Sclerosis

Published 20/10/2021 14:51:32

New research finds that quitting smoking may cause slowing of Multiple Sclerosis (MS) disease progression.  We all know that smoking is bad for a person’s health, and previous studies have shown that smoking can make MS Symptoms worse. This research, which is the largest independent investigation into smoking and MS verifies this – smoking causes … Continue reading "Never too late to quit smoking for people with Multiple Sclerosis"

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Researchers at Cardiff University are looking at the impact of health conditions on the quality of life of family members

Published 20/10/2021 14:09:28

The lives of partners and family members are often affected by a person’s health condition,,  including MS. Although family members caring for or living with a patient may experience equal or sometimes even more impact on their life quality than the patient themselves,, the wider family burden of disease has been largely unrecognised or ignored. … Continue reading "Researchers at Cardiff University are looking at the impact of health conditions on the quality of life of family members"

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How employers can support people with multiple sclerosis to stay in employment

Published 16/08/2021 14:11:56

By Dr Elizabeth Goodwin, Health Economics, University of Exeter Researchers from the University of Exeter have worked with the UK Multiple Sclerosis Register to explore how people with MS make decisions about their working lives. In December 2017, 2350 members of the MS Register completed a survey that asked them to imagine choosing between two … Continue reading "How employers can support people with multiple sclerosis to stay in employment"

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What you told us: Covid-19

Published 27/07/2021 14:06:42

Since March 2020 have been asking our participants about their experiences in the pandemic. We have had an overwhelming response and wanted to share back the research that your answers have generated. In this short video we explain what we collected and when and then tell you about the research that this has fed in … Continue reading "What you told us: Covid-19"

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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"

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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 ""

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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.

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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

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Covid-19 Vaccination opinion update – 8th January 2021

Published 10/01/2021 16:10:30

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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

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

Published 12/12/2020 16:08:57

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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"

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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"

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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"

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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"

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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"

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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"

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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"

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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  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"

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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) "

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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"

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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"

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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"

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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"

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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?"

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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"

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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"

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MSiDMT: An Electronic Cognitive Outcome Measure for MS

Published 19/09/2019 16:02:12

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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…

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