Welcome to the Autumn ‘24 edition of the UK MS Register newsletter. In this edition we share Register updates, details of the latest papers published using Register data, and an update on some of our collaborative projects.
News
Queen’s Anniversary Prize
The UK MS Register is part of Population and Data Science, a department within the Faculty of Medicine, Health and Life Science at Swansea University. Earlier this year the group was awarded a Queen’s Anniversary Prize in recognition of their contributions in harnessing public data to improve population health and wellbeing through the world-renowned SAIL Databank. SAIL stands for Secure Anonymised Information Linkage and the SAIL Databank is a world-class flagship for the secure storage and use of anonymised person-based data for research to improve health, well-being and services. Read more about this prestigious award here.
Summer Interns Join the Team
This summer we welcomed two fantastic interns to the team. Joy (left in photo) and Laura joined us for two months as part of the HDR Black Internship Programme, both working on their own individual projects using UK MS Register data. Joy was looking into aspects of pain and multiple sclerosis, while Laura focused on diet and MS. You can read more about the interns here.
Goodbye Katie!
In July we bade a fond farewell to team member Katie. Katie had been with the UKMSR for more than a decade and many of you will have spoken with her over the phone or by email through the years. We wish her the very best of luck with her next adventure.
It’s That Time: Autumn Questionnaires
We recently emailed to let you know it is time to complete your next round of questionnaires. You can find out which questionnaires you need to do by logging in to your account here. It’s so important for all our participants to complete their questionnaires regularly as this provides the most accurate information about MS in the UK today.
Helen has been with the UK MS Register since it started and really enjoys participating, saying:
“I find the graphs showing my progression very interesting and love it when my email comes though saying I need to fill out more questionnaires! It really helps me build a picture of my journey with my MS.”
To find out more about exactly what we are asking, and why, you can view our new video here. In this short video Dr Rod Middleton breaks down what each of the questionnaires mean, and how they are useful for research into MS.
Publications
When you donate your data to the Register through questionnaires, or when you consent to having your NHS records linked, you are helping us to collect the richest possible information about what MS looks like in the UK today. This data can then be accessed by researchers and is sometimes used in papers published in scientific journals. Here are some recent publications we have been involved with:
The global patient-reported outcomes for multiple sclerosis initiative: bridging the gap between clinical research and care.
Summary: The Global PROMS (PROMS) Initiative is a collaborative endeavor by the European Charcot Foundation and the Multiple Sclerosis International Federation. They aim to boost the influence of patient input on MS care and establish a more coordinated view on Patient-Reported Outcomes (PROs). Read more here.
People with multiple sclerosis help design a tool to measure physical functioning and how it affects their daily lives: a plain language summary.
Summary: Researchers worked with people with MS, neurologists, and measurement experts to create an easy-to-use questionnaire to measure the physical function of people with MS. Read more here.
Data Academy
We are running our popular Data Academy again in November. We host this event every year as a way of sharing our expertise in analysing big healthcare data with other professionals who may not have a background in this area, and are hoping to develop new skills. The event will take place at the MS Society offices in London and is open to health researchers with very little to no experience in the analysis of population health data. For more information, please click here.
Other Studies
Cognitron Brain Games
We were in touch recently to let you know that the Brain Games were available once again on the Register. We had a fantastic response with over 2000 of you having a go – thank you to all who took part. Thank you also to those who got in touch with feedback, your comments were constructive and thoughtful and will be passed on to the team at Imperial to be taken into account when they develop next year’s round of games.
Why do we ask you to complete the games?
When we say ‘cognition’ we mean the mental process of getting knowledge and understanding through thought, experience, and the senses. Like many other symptoms of MS, cognitive symptoms vary greatly from person to person, and can sometimes be hard to spot. This is why we are working with researchers from Imperial College London to develop a tool to detect and monitor changes in cognition over time for the MS population.
Why there weren’t results this time?
We ran these tests in 2023 and shared results, however we received feedback from many people that the results were confusing. We are therefore in the process of developing results for you that are clear and informative. Everyone who took part this round of tests has helped with this.
What’s next?
We hope to run the games again in future, probably next year. The team are working on refining the games, focusing on things like how often to run the games, when best to run them, and how to best provide results to participants. They are also looking at using the data collected so far in research projects exploring cognition in MS.
Octopus
Octopus is a research project aimed at finding treatments that can slow down disability progression in people with MS. The UK MS Register hosts the Registration of Interest (ROI) for Octopus to identify potential recruits for the sponsor organisation, University College London. So far over 2500 people with MS have now registered. As of 15th August ‘24, there are 13 hospital sites now open to enrolment and 307 people with progressive MS have been randomised (randomly assigned to groups). The recruitment to the trial takes place in stages. The first stage needs 375 participants and is nearing completion, it is estimated to close to recruitment in December 2024. Stage two is estimated to start in January 2025 and will recruit a further 825 people to the study. You can read more as the trial progresses here.
Pregnancy Register
We have now recruited over 300 people to the UK MS Pregnancy Register! We are hugely grateful to every single person that has taken part, providing information about themselves and their baby to our study. The information that we have got as part of this study shows that most of you take disease modifying treatments before pregnancy, and about half of you continue this during pregnancy. The most common treatments to continue during pregnancy are glatiramer (Copaxone and Brabio) and natalizumab (Tysabri). Whilst a few of you have had relapses during pregnancy, most people haven’t, which is really reassuring. We have also not had any problems with babies reported that can be linked to taking medications. It is really important to make sure that you come back to fill in the questionnaires after you have had your baby (at about 3 months and again around their first birthday) so that we can make sure that this information is accurate – it helps us to give the best possible information to people who are planning pregnancies right now and in the future.
CONSENTOR
CONSENTOR launched, recruiting, and already transforming research.
The Combined One-off Neuroimmunological conditions Study and trial Eligibility Notification Tool and Observational Research consent form (CONSENTOR) launched in October 2023, and more than 2,000 people with MS have already signed up. CONSENTOR empowers people with MS (or their families and healthcare staff) to contribute their healthcare data to MS registries, including the UK MS Register, UK MS Pregnancy Register and MSBase. They can also participate in a trial eligibility checker and help us to reduce healthcare inequalities. And this is all done by completing a quick form (online or paper), from the comfort of their own home.
The trial eligibility checker has been used for the first time in September 2024, fully recruiting a trial within one week that had spent 18 months trying to recruit beforehand.
“The UK MS Register team have been superb: their technical knowledge and deep understanding of MS have been key to CONSENTOR’s early success. We are deeply grateful to them, and to the people with MS who have driven much of it’s development.”
Dr. Will Brown, Chief Investigator
CONSENTOR will continue opening to new sites over the next 12 months, and people with MS at each site will be informed as soon as they can sign up.
Events
IPDLN, Chicago, 15th September
Rod will be attending the International Population Data Linkage Network Conference this year. This conference brings together researchers, practitioners, and students to share the latest research and advances in population data linkage and healthcare data science.
ECTRIMS, Copenhagen, 18th September
The world’s largest MS research conference. We will have a stand and some of the team will be on hand to speak to researchers and healthcare professionals, sharing details about the UK MS Register and the opportunities for collaborative research.
GMDS Summer Academy, Munich, 23rd September
Some of our analysts will be attending a workshop hosted by the German Association for Medical Informatics, Biometry and Epidemiology (GMDS). The focus will be on the practical application, interpretation, and challenges of using AI and machine learning in Statistics.
South West Wales Newly Diagnosed Day, Carmarthen, 27th September
Team members will have a stand at this patient-focused event hosted by the MS Society. We will be available to answer questions and consent people with MS to the clinical side of the UK MS Register.
End of Year Webinar
For the first time this December we will be hosting an end of year meeting for everyone involved in the Register. This will be a brilliant opportunity for the Register to share a summary of this year’s activities with our participants and clinical partners. We will be in touch closer to the time with more details and information on how you can sign up.
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
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