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Spring Newsletter 2025

Newsletters

Welcome to the UK MS Register Spring 2025 newsletter. 

Data Security

One question we are asked time and time again is ‘how secure is my data on the Register?’ We understand that we are asking for a lot of personal information from our participants, and we want you to know that it is being collected, stored, and used for research in the most secure way. Register PI Dr Rod Middleton has created a short video explaining the process which you can view on our YouTube channel.

Appointment Reminders Feature

We are constantly reviewing what does and doesn’t work well on the Register. A few years ago we added an ‘appointment reminder’ feature on to participants accounts, however we have been made aware by many of you that this feature does not seem to be very useful and in some cases is causing confusion. As such we have decided to remove this feature when we conduct our next update of the UK MS Register.

New Studies

Currently recruiting:

  • LiON – Likelihood Of Neurodegeneration, or LiON for short, is a new and exciting research study led by Dr Richard Nicholas, clinical lead of the MS Register, and his study team at Imperial College London. The team want to dive deeper into the family risk of MS by recruiting first and second degree relatives of people living with MS. They are looking for parents, children, brothers, sisters, aunts, or uncles of someone with MS to take part. If you are would like to learn more you can read our blog , or sign up to the study.

Over the past few months we have been pleased to host some guest questionnaires which you may have seen when logging in:

  • MS and Clinical Trials – Do people with MS do better on clinical trials, even if they aren’t selected to take a new treatment? This is the question researchers from Northern Ireland are hoping to answer. Last year the Register hosted a questionnaire on behalf of Dr Rachael Kee, Consultant Neurologist, and Dr Ger Mullan, a doctor with an interest in MS, both from Belfast. You can read more about this research in this blog. Thank you to those who took part – we will keep you informed about the results of this research.
  • MS and Menopause – In October 2024 the Register hosted a questionnaire on menopause and MS, developed by researcher Imogen Collier, a PhD student at the Centre for Preventive Neurology, Queen Mary University of London. Imogen and her team observed that there has been very little research into the potential impact of menopause for people with MS. This questionnaire has now closed, but we would like to express our thanks to everyone who took part. Imogen is working on the data collected and we will share any findings with you as soon as we can. You can read more about this research on our blog pages.

Webinar 

In December the Register hosted a webinar to mark the end of another year of MS research. The session was open to Register participants and was hosted by PI Dr Rod Middleton. Rod provided a summary of the Register’s activities during 2024. This was followed by clinical lead Dr Richard Nicholas who explained what the Register does with all the participant data it collects. The final speaker was Dr Jeremy Chataway who provided an update on the Octopus trial. We finished the session with some questions and answers from participants. The feedback on the webinar was really positive, and this is an event we plan to host again soon. You can view a recording of the webinar by following this link to our YouTube channel.

The Team

Welcome Sue!

In November we were pleased to welcome a new team member:

“Hi I’m Sue, the new Administration Assistant for the UK MS Register Team. I’m really excited to be a part of a brilliant team that does incredible work. I grew up in Gower and studied Law at Swansea University. I’ve always had a passion to have a job which makes a difference so when the opportunity came up to work with the UK MS Register, I was thrilled to apply. My previous roles have included working for Somerset Children’s Services, and Student Support Services within Swansea University. I am huge football fan and thoroughly enjoy playing for Penclawdd Ladies every weekend. If I’m not watching/playing football then you’ll find me reading cookery books or recipe swapping with anyone that will listen!”

Interns

In February we welcomed intern Tobias to the team. Tobias joins us from the Swansea University Media and Communications BA course. Currently studying in his second year Tobias is hoping to put some of his media and PR skills to good use by helping with Register with a variety of communications projects.

After a positive experience with the HDR Black Internship programme last year, the Register will once again be hosting a data science intern this Summer. We are in the early stages of recruitment but will be able to share more on this in our Autumn newsletter.

Patient and Public Involvement

The UK MS Register are proud to have a very active and engaged PPI group, the self-named Brainstormers. The purpose of a patient and public involvement group is to support participant retention and outreach. We ask the group to help us continuously improve the Register for participants, and to support researchers in their applications. We recently welcomed some new members to the group including Annie, who has kindly shared her experience in a new blog which you can read on our website.

Annie and her dogs.

Events

Members of the Register team will be in attendance at the following events:

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

Social Media

We are on social media! Follow us on Threads, LinkedIn, Facebook and Instagram to stay up to date with project news, events and opportunities.

Annie Joins the PPIE Group
Questionnaire Guide