Welcome to the Autumn ‘25 edition of the UK MS Register newsletter. In this edition we share team news, details about our upcoming trip to the ECTRIMS conference, and updates from some of our collaborative projects.

Team News

Join us in wishing a warm welcome to our newest team member Weiling Yu. Weiling has joined the team as a research analyst. Weiling is currently being introduced to our data capture platform and we hope that with an additional analyst on the team we will be able to further enhance our data collection procedure.

We were delighted to be a part of the HDR UK Black Internship Programme once again this summer. In June we welcomed Femi to the team, and during the course of his internship he has worked on a project titled ‘Ethnic and socioeconomic disparities in MS progression and management : A real-world analysis using the UK MS register.’

We were also joined by medical student Rolake, who was visiting from the University of Houston, Texas. Rolake spent a few weeks working with the Register as part of her exchange programme. She has a real interest in neuroscience and MS, and plans to take the knowledge gained back with her to the USA where she will complete her studies.

Questionnaire Time!

The next questionnaire window will be open throughout September – you may see emails from us asking you to log in. If you think you may have forgotten your password, don’t worry – you can reset it by following this link.

Have you ever wanted to learn what each of the questionnaires is for, and why we ask them? Check out this short video on our YouTube channel to listen to Rod explaining each of the questionnaires in more detail. Take me to the video. 

You might remember that we launched some new lifestyle questionnaires last December. We asked you about things like sleep, bladder and bowel health, and social activities. Based on the information you shared with us the team were able to present an abstract at the MS Trust conference this year, which you can read about here. We will be asking you to answer these questionnaires again this year, and will be in touch in a couple of months to let you know that they are available.

We added the lifestyle questionnaires based on feedback that you gave us about what we should be asking. If you have any other ideas about the type of things we should ask, please do let us know by emailing: contact@ukmsregister.org

Weight-Loss Drugs

Researchers are aware of the rise in weight-loss drugs such as Wegovy, Mounjaro, and Ozempic. The experiences of people with MS who are taking these drugs is potentially a very interesting field of study and more information is needed. If you are taking any of these drugs please make sure you update your medication list when you next log in to the Register.

Thank you in advance for supporting the Register by answering your questionnaires. Without your input we would not be able to conduct our own research, or share our amazing bank of data with other researchers who are also trying to make sense of MS.

MS Trust Podcast

Back in July project lead Rod joined the MS Trust to record an episode of their podcast, Multiple Sclerosis – Breaking it Down. The theme of this episode was sleep disturbance in MS and host Helena Jidborg Alexander was able to speak with Rod about the recent sleep survey which many of you answered when it was deployed through the Register. You can listen or watch the podcast by following this link.

ECTRIMS

We are once again packing our suitcases to travel to the ECTRIMS conference, which this year is being held in Barcelona, from 24th – 26th September. ECTRIMS is the world’s biggest and most influential conference devoted to research and care in multiple sclerosis. We have worked hard this year to be able to submit our research ideas to this conference, and are thrilled to share with you that we will be presenting multiple posters and giving a talk. The titles of these posters are:

• Don’t dream its over: Impact of Sleep and MS, a UK MS Register Study – James Witts
• Disease Modifying Therapies in a Post COVID United Kingdom – Dr Jeff Rodgers
• The Impact of Menopause for People with MS in the UK MS Register – Imogen Collier

Dr Owain Howell is also giving a talk on his work with MS Register analyst Sarah Knowles titled ‘Defining rapidly worsening MS through the combined analysis of patient registry, clinical and autopsy data.’

Get Involved!

This year the Register are proud partners of the ECTRIMS Patient Community Day, which takes place on the final afternoon of the conference (26th Sept). This free event is designed for people living with MS, and their carers, to stay informed of the latest advancements in MS research. You can sign up here to take part in this event online, and you can also submit questions in advance for the panel of experts to discuss on the day (as many questions will be answered as possible depending on time).

Keep an eye on our social media channels during this week in September as we will be sharing live updates from the conference.

Related Studies

Refuel-MS

We are now hosting the registration of interest for the Refuel-MS study. This study, developed by Professor Rona Moss-Morris and her team at King’s College London, aims to design a tailored digital treatment to help manage MS-fatigue. Find out more by visiting their website. You can sign up to this study by following this link.

MS Pregnancy Register

The MS Pregnancy Register continues to go from strength to strength. The team, led by neurologist Dr Ruth Dobson, have recruited more than 350 participants and are working to make sure that they have as much follow up information as possible as well as capturing as many MS pregnancies as they can. Read more here.

AttackMS

This clinical trial, led by neurologist Professor Klaus Schmierer at Queen Mary University of London, is testing whether rapid treatment with a highly effective multiple sclerosis (MS) drug (within just two weeks of the first presentation) could change the course of the disease. A guest blog from the AttackMS team will shortly be available on our website.

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Your Comments

We value feedback your feedback; it is only by hearing from you about what you think of the Register that we can make improvements. If you have any comments, questions or suggestions then please get in touch with us: contact@ukmsregister.org

Blogs

We couldn’t possibly fit all our activities into this newsletter. For more regular updates please visit out blog pages by following this link.

Social Media

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