February Newsletter 2024

News

Welcome to the Spring 2024 edition of the UK MS Register newsletter. In this edition we share a roundup of our achievements in 2023, the latest papers that your data has enabled us to publish in scientific journals, details about a new an email initiative that we sent to participants who contributed data in 2023, and an update on some of our other collaborative projects.

Register Recap: Key Achievements in 2023

As the first newsletter of the year we thought it was a good opportunity to reflect on our achievements from 2023.

  • Nearly 8,000 people with MS shared their data with the Register, answering almost 60,000 questionnaires!
  • We published 5 scientific papers and 16 abstracts (summaries below).
  • We attended and presented at lots of MS events, including ECTRIMS (European Committee for Treatment and Research in MS) – the biggest MS conference in Europe.
  • The UK MS Register supported recruitment for three other MS studies; ADAMS, the MS Pregnancy Register, and the Octopus trial.
  • 995 consents from 46 NHS hospitals (patients signing consent form to have their medical records linked to the Register).
  • We welcomed Ellie Hubble as Communications & Engagement Coordinator.
  • Our summer intern Deepak Pant was awarded a Technical & Development Award for his work with the Register.

 

Three summer interns stand holding certificates.
Summer intern Deepak (far left) accepting the award for his work with the UK MS Register.

Latest News

Congratulations are in order for Register Chief Investigator Dr Rod Middleton who, after years of hard work, recently obtained his PhD! Rod’s career journey has been featured in the latest blog from the Population & Data Science team at Swansea University, read more here.

Register PI Dr Rod Middleton smiles at the camera in a grey suit and purple tie.
Register PI Dr Rod Middleton.

The team held an away-day this month in Bath with colleagues from all over the UK travelling to catch up and discuss future plans for the Register. The Register team were joined by Jacqui-Ann Hanley and Beth Grimsey from the MS Society.

The Register team stand in front of a projector screen in a blue room.
Some of the UK MS Register team with colleagues from the MS Society.

 

 

 

 

 

 

You may soon see UK MS Register leaflets in a therapy centre near you! We know that therapy centres across the UK work hard to offer support and services to people with MS. We recently contacted as many centres as possible to ask them to help us promote the Register to their clients. If you know of a therapy centre, support group, or social group who could help us spread the Register message please get in touch: contact@ukmsregister.org We can supply leaflets, posters, and other marketing materials on request.

A table with a selection of UK MS Register marketing items including bag, notebook and mug.
A selection of UK MS Register promotional items.

Research 2023

The UK MS Register has celebrated its 12th year, with many of our participants with us since the very start. It’s thanks to participants completing questionnaires every six months that we are able to carry out and collaborate on research into MS.

This year we published five scientific papers. To share findings, researchers write a scientific paper which gets sent to a journal for ‘peer’ review. Peer review is a critical process in academic and scientific communities where experts evaluate the quality and validity of research papers before they’re published. When a researcher submits their work to a journal, it’s sent to other experts in the same field who assess the paper’s methodology, findings, and conclusions. These peers provide constructive feedback, identify any flaws or errors, and determine if the research meets the standards of the field. Peer review ensures that only high-quality, credible research is published, maintaining the integrity and reliability of scientific knowledge.

Here is a summary of papers published in 2023 by the UK MS Register, to read about these papers in more detail, please see our research blog here.

Research 2024

This year we are off to a great start as Register analyst Sarah Knowles has been published in the prestigious journal Annals of Neurology. The scientific paper is titled “Comparing the Pathology, Clinical, and Demographic Characteristics of Younger and Older-Onset Multiple Sclerosis”, and it focuses on late-onset MS (or LOMS). Read more here.

Sarah stands in front of a research poster in a green t-shirt.
Register analyst Sarah Knowles.

Data from the Register has also been used in a scientific paper published in Multiple Sclerosis Journal titled “University education facilitates uptake of disease-modifying therapies for multiple sclerosis: A community-based study using the UK MS Register”, looks at whether a person’s education level has any impact on their uptake of disease modifying therapies. Read more here.

Most recently we contributed to a scientific paper published in Frontiers in Neurology titled “MS care: integrating advanced therapies and holistic management.” This can be viewed here.


A new type of yearly email – Your MS Register 2023

In December 2023 we sent out our first ever ‘round up’ email to everyone who had completed questionnaires during the year. We understand from speaking to participants that our questionnaires take time and effort, and participants are keen to see the final research. We wanted to show active participants what difference their contributions actually make, in the hope that this encourages them to keep up the good work!

The email was personalised for each participant and included information like:

  • How many questionnaires they contributed to out of the total number available.
  • How many scientific papers their data was included in.
  • How many posters accepted by conferences were developed using their data.

We also shared summaries of the papers we published during 2023 so participants could see exactly the kind of research they were involved in.

The email was well received, with participants expressing that it made them feel ‘proud’, ‘determined’ and ‘happy’. We plan to continue this as a feature each year; in order to receive the email, just make sure that you log in and are active on the UK MS Register website in 2024.

If you didn’t receive an email this time it was most likely because we hadn’t heard from you in 2023. We know that life can be busy and participants don’t always get around to completing the Register questionnaires. But it’s not too late to get involved this year! Our Spring questionnaire window will be opening very soon, and if you contribute to any questionnaires in 2024 then you will receive your own personalised round up in December.

An example of the Yearly Round Up email.

The email included a handy glossary which explains what terms such as ‘published paper’ or ‘scientific poster’ mean – you can read more here.


Other Studies

The MS Pregnancy Register

As of December 2023, the MS Pregnancy Register has recruited 223 participants.

We have lots of exciting data to share with you all which you can read in our blog. But here are some key highlights from our most recent analysis:

  • Most of the women have relapsing remitting MS and have previously taken a disease modifying therapy (DMT), but at the time of signing up less than half of you reported to still be taking a DMT.
  • Just under half of women had a prior pregnancy.
  • 6% of women reported experiencing a relapse either during or after pregnancy, reassuringly no relapses were reported as severe or required hospitalisation.
  • There were no preterm births, and no major congenital malformations were reported.
  • 40% of women were exclusively breastfeeding at 3 months, some women switched to formula/ mixed feeding due to low milk supply.
  • 6 women said their MS had influenced their breastfeeding decision. It was great to hear all babies had reached their expected milestones by 12 months.

What’s next?

We are submitting our work to MS Frontiers, Association of British Neurologists (ABN) Conference and ECTRIMS in September, which are conferences designed to share, promote, and enhance MS research. These are exciting opportunities to highlight our work so far and demonstrate the feasibility and importance of a patient-facing MS Pregnancy Registry.

Thank you again to everyone who has already signed up, we couldn’t do this without you! If you are pregnant or have friends/family with MS who are considering starting a family please help by telling them about the MS Pregnancy Register. More information can be found here.

 

The Octopus Study

Octopus is a research project aimed at finding treatments that can slow down disability progression in people with MS. The UK MS Register has helped the team at UCL (CHECK) recruit to this trial. As of January 2024, there are 12 hospital sites now open to enrolment in Octopus and over 2500 people on the waiting lists to see if they are eligible. Recruitment to the trial will happen in stages. The first stage will run until 2024 and needs 375 people. Stage two will start in 2025 and will recruit 825 people. You can read more as the trial progresses here.

 

The ADAMS Study

The ADAMS study is trying to understand how genes affect the risk and severity of MS in people from ethnic backgrounds. We’ve been working with the UK MS Register for over a year now to help recruit people to the study. We’ve recruited over 900 people so far and are currently analysing the genetic information of the first 700 participants. Over 120 participants have signed up via the UK MS Register.

The people who’ve signed up for the study come from a broad range of ethnic and ancestral backgrounds. They identify as follows:

  • 26% South Asian
  • 17% Black/Black British
  • 19% Mixed/Other
  • 32% White
  • 7% Missing / Prefer not to answer

A colourful pie chart showing the ethnicity of participants on the ADAMS study.

Based on our results so far, we think that people from South Asian and Black backgrounds tend to be diagnosed with MS at a slightly younger age.

This study is the largest project looking at MS genetics in non-European ancestral backgrounds in the UK. It is a big collaborative effort across the UK that would not be possible without a huge number of fantastic collaborators, including the MS Register, and without the generosity of the people with MS who’ve given up their time (and their saliva) to take part. We are incredibly grateful and hope to share the full genetic findings later this year.

If you have MS and you identify as Black, South Asian, Ashkenazi Jewish please read our website to find out more or email us at adams_study@qmul.ac.uk. You can also find out more about us on the MS Society website or by reading our paper here. Once again thank you again to everyone who has already signed up, we couldn’t do this without you!

The ADAMS study is funded by the Medical Research Council (UK), the UK MS Society, AIMS2CURE, and Barts Charity.


Other Support

New for 2024, Asian MS launched their Chai & Chat sessions in January. Open to all this is a great opportunity for those with MS within the Asian community to connect online and share experiences. Hosted by blogger and MS Society volunteer Nin Sambhi, the sessions are relaxed and offer a friendly space for people with MS and loved ones to chat informally. Follow Asian MS on social media for the latest dates, or view their Eventbrite here.

Nin stands smiling in a black top holding a white dog.
Asian Chai & Chat host, Nin Sambhi.

The words 'We Need You' hand in front of a blackboard.

Are you holding an MS event soon? We Need You!

We need volunteers to help promote the UK MS Register to their local support groups and networks (online or not!). You could:

  • Drop off our printed leaflets/brochures at your local MS branch.
  • Share posts about us on social media.
  • Tell friends within your MS community about us.

Planning to give a presentation about MS? We can provide you within some digital materials that you can include about the Register. We will also send you some freebies to say thank you – such as leaflets, post it notes, pens, mugs and other goodies!

Help us recruit more participants and spread the word about the important work being done by the UK MS Register. If you think you can help or know someone who can, please get in touch with us at contact@ukmsregister.org


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


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