Welcome
Hello and welcome to the September 2023 edition of the UK MS Register newsletter. In this edition we share a roundup of the latest papers we have had published, a rundown of events we have attended and have coming up, and some general useful information.
There are over 26,000 people who have interacted with us on the website and over 17,000 who have given consent for their medical records to be linked to the UK MS Register. Thank you all.
What we do with all this data? The answer is a lot! You can keep up to date with MS Register news on our blog pages, by following us on social media, and hopefully this newsletter will show you how your contribution is making a difference to MS Research in the UK.
You are a very responsive group – thank you! Whenever we host new questionnaires on the Register website, we are always amazed at how your answers come flooding in.
Your online responses enable researchers to access huge amounts of anonymised data in shorter periods of time than they might if using more traditional methods (such as postal or face to face survey). Additionally, because you live all over the country, in cities and in the country and attend all manner of NHS services from community to big academic research centres your answers provide more representative responses than studies that are confined to one area.
All your answers add immense detail to what it is like to live with MS in the UK today.
Recently Published Papers
The Register team uses data donated by you to publish scientific papers regularly, but we also collaborate with other researchers. Here are some of the most recent papers we have had published.
- Does depression increase risk of MS progression?
Depression is unlikely to play a role in making disability progression worse in people with multiple sclerosis, a new study published in Scientific Reports has found. The UK-wide study by Swansea University, University of Cambridge and Queen Mary University of London gathered information from 862 people with MS, using data from the UK MS Register. The outcome of this study highlights the need for prioritising mental health support for people with MS.Read more ➜ - Diet and MS
In 2022 many of you completed a Register questionnaire focusing on diet and MS (the official name for this was the EPIC Norfolk food frequency questionnaire). This was a long and challenging survey to complete, however 3,741 of you persisted and gave your invaluable responses. These answers added to the last time we asked this survey in 2016 making this one of the largest diet studies ever carried out in people with MS, spanning over six years. There are a number of papers planned using this data, and researchers have had two posters accepted for the influential ECTRIMS conference.Read more ➜ - A cognitive fingerprint of MS
In most clinical practice the standard way to assess cognitive (memory and thinking) symptoms is with a pen and paper – if it’s done at all. Testing is time-consuming and must be done in person. So cognitive symptoms are often overlooked, despite up to 80% of people with MS experiencing them. Researchers at Imperial College London designed cognitive tasks that can be done on online using Cognitron. The important thing about Cognitron is that is has been tested on the UK public previously – known as the Great British Intelligence test. This gives the researchers the ability to compare the responses of people with MS against people that don’t have MS. This is known as ‘control data’. Over 3,000 of you have tried the various tasks that make up Cognitron, making it the largest study ever on cognition in MS. The data is still being analysed, but a unique ‘cognitive fingerprint’ of MS has been identified based on responses to specific types of tests that differ from the ‘control population’. It seems that this fingerprint appears to vary between different types of MS. - Read more ➜
- For a list of all publications which use data from participants on the UK MS Register – please see here.
Other Studies you can sign up for inside the UK MS Register
To view other studies available to you, sign into the Register and arrive at ‘My Home’ then select ‘Other Studies’.
The MS Pregnancy Register:
Developing a picture of what pregnant women with MS are doing in terms of managing their MS during pregnancy, so that we can try to improve things for women in the future.
The ADAMS Study:
Investigating how genes affect the risk of getting MS in people from different ethnic backgrounds.
The Octopus Trial:
A revolutionary trial that will transform the way we test treatments for progressive MS – you can register your interest from the Homepage of the UKMSR.
Did you know there are lots of other MS studies around the UK you can get involved with? Here are some to name a few:REFUEL-MS: AttackMS: Chariot MS: MS Tissue Bank: SIZOMUS: |
Your Data
As we approach September questionnaire time there are some things we wanted to share. One question we are frequently asked is ‘why do I have to keep answering the same questions every six months?’ Well, each of our questionnaires is based on a standardised questionnaire or ‘Patient Reported Outcome Measure’. Even if you don’t feel like anything has changed since the last time you answered our questions, there could be slight differences that are helpful for us to capture. (You can view changes in the ‘feedback section’ of the portal.) We use these questionnaires so that we can compare and measure our results with other MS studies and across other fields.
We know that sometimes the questions can seem confusing, awkwardly written or do not fully consider your individual situation. If this is the case, then please add more information to the ‘unique experiences’ form on the ‘My Journey’ page. Support is always available from the team if you are struggling with any aspect of the Register.
Feedback ReportsDid you know that you can use the UKMSR as a tool to keep a log of any changes to your MS, relapses, medication, symptoms and many more elements and use this to communicate with your MS team? Have you done this already? If any of you use the Register in this way and find it helpful, we want to hear from you! Or if you have any ideas on what you would like to see in your report – please get in touch so we can have a chat either via email, phone or video call. |
Events
Past Events
It’s been a busy few months and MS Register PI Rod has been out and about at the following events:
April: Attended American Academy of Neurology Annual Meeting, Boston.
May: Attended Association of British Neurologists/IICN Joint Annual Meeting 2023, Belfast.
June: Attended national meeting of the ACORD Collaboration and MRC CTU ACORD Fellows Academy Edinburgh, MS Pregnancy Register steering group meeting.
Presented at the All-Wales MS Study Day Swansea.
July: The team hosted a Data Academy in London, sharing their knowledge of data analysis with a group looking to learn more about manipulating and analysing large health care data sets.
August: Progressive MS Webinar – On 1st August the MS Register hosted a webinar focusing on Progressive MS and clinical trials. The live webinar was open to those on the Register with progressive MS, and the response was fantastic with more than 100 people attending. A recording of the webinar can be viewed here.
Webinar with MS Together – On 23rd August we presented at an online event hosted by the charity MS Together, along with fellow project MS Pregnancy Register. More information can be found here, we will share a recording if one becomes available.
Upcoming Events
From 11th – 13th October the team will be attending the world’s largest MS research meeting, ECTRIMS MSMilan2023, to hear about the latest advancements in MS research.
On 22nd September some of the team will be in London at the official launch of new charity MS Together.
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Other Support
We work with the following groups:
The Nerve of my MS
A non-profit patient organization dedicated to supporting and advocating for Black individuals with Multiple Sclerosis (MS).
MS Together
Providing services of advice and support to people affected by MS, with a particular focus on those living with MS aged 18-35.
Asian MS
A national group that offers tailored and culturally sensitive services for Asian people with MS, their carers, friends and family.
The Brain Stormers
Our very own patient and participant group. The group meets regularly to provide feedback and input on all aspects of the UK MS Register, from checking how the website works and how we can make it more useful to participants to helping researchers plan their research to ensure it is appropriate and relevant to people with MS. We would like to take this opportunity to say a big thank you to this group as you have invaluably helped us over the last few years.
Your Comments
It is very important to us to hear what you think of the Register. If you have any comments, questions or suggestions then please get in touch with us:
contact@ukmsregister.org
Social Media
We are on social media! Follow us on Twitter, LinkedIn, Facebook and Instagram to stay up to date with project news, events and opportunities.
