Published 02/12/2025 14:33:35
A guest blog from Register participant Jonathan marking twelve months since joining the PPI group, the Brainstormers: After living with Multiple Sclerosis for more than a decade, I reached a point where I knew I wanted not only to manage my own condition, but also to contribute to improving the lives of others living...
The post A Reflection of My First Year with the Brainstormers first appeared on UK MS Register Blog.
Read morePublished 29/10/2025 15:01:35
A UK clinical trial 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. The AttackMS trial, led by Professor Klaus Schmierer at Queen Mary University of London, is the first study to treat individuals with suspected...
The post Attack is Back! first appeared on UK MS Register Blog.
Read morePublished 20/10/2025 15:26:04
In August, Swansea University had the pleasure of welcoming a group of dedicated fundraisers and supporters of the MS Society, led by Ceri Bevan, Fundraising Manager for MS Society Cymru. The visit offered a unique opportunity for guests to see firsthand how their contributions are helping to drive forward crucial research into multiple sclerosis (MS)...
The post MS Society Visit to Swansea University: Campus Research Day first appeared on UK MS Register Blog.
Read morePublished 16/10/2025 10:40:50
Octopus is recruiting well and now open in Mid Yorkshire! In Octopus, there have been over 6000 registrations so far. 3330 of these could be eligible for Octopus and are suitable to have a telephone screening phone call. Of these: 703 have had a telephone screening call with their chosen site 685 potential participants have attended their chosen hospital site for...
The post Octopus Update October 2025 first appeared on UK MS Register Blog.
Read morePublished 07/10/2025 10:10:57
The UK MS Register team had an inspiring and successful trip to the ECTRIMS 2025 conference in Barcelona, the 41st Congress of the European Committee for Treatment and Research in Multiple Sclerosis. This event is the world’s largest annual meeting dedicated to research in multiple sclerosis, and a really important date in the MS research...
The post UK MS Register at ECTRIMS 2025: A Week of Science and Celebration first appeared on UK MS Register Blog.
Read morePublished 08/09/2025 10:20:27
Large-scale online assessment uncovers a distinct Multiple Sclerosis subtype with selective cognitive impairment Cognitive tests deployed using the UK MS Register have been used in important new research from the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London. This research has revealed that 1 in 4 people with MS experience significant issues...
The post New publication – Nature Communications first appeared on UK MS Register Blog.
Read morePublished 28/08/2025 11:53:48
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 post Autumn Newsletter 2025 first appeared on UK MS Register Blog.
Read morePublished 27/08/2025 14:24:58
The UK MS Pregnancy Register continues to go from strength to strength. We now have over 350 registered participants, and are working to make sure that we have as much follow up information as possible as well as capturing as many MS pregnancies as possible. If you are contacted by the researchers on this study...
The post MS Pregnancy Register Update – Summer 2025 first appeared on UK MS Register Blog.
Read morePublished 22/07/2025 11:50:17
On Friday 20th June we celebrated #Red4Research day. The aim of this special calendar day is to get as many people as possible wearing red to show their support and appreciation for everyone who participates in or undertakes research. It’s a fantastic opportunity to highlight the incredible work that goes on in research, and the...
The post #Red4Research 2025 first appeared on UK MS Register Blog.
Read morePublished 09/06/2025 11:51:37
In May Leah and Ellie from the Register team travelled to London to visit the MS Society Tissue Bank. The bank is based within Imperial College Division of Brain Sciences. On arrival they were met by Rory Türkmen Smith, the Tissue Bank Engagement Manager. Tissue donations (brain and spinal cord) are welcomed from people with...
The post UKMSR Visit the MS Tissue Bank first appeared on UK MS Register Blog.
Read morePublished 27/05/2025 14:27:49
On 7th May the UK MS Register had the pleasure of attending an ‘MS Conversations’ event hosted by MS Society Cymru. The event was held at the Senedd Cymru buildings in Cardiff Bay, home of the Welsh Parliament. The theme of this year’s MS Awareness Week was ‘MS Conversations’ with the message that opening up...
The post UK MS Register at the Senedd first appeared on UK MS Register Blog.
Read morePublished 25/04/2025 10:38:36
We would like to apologise for the long gap since our last update. We know many of you have waited a long time and the Octopus team thank you sincerely for registering your interest in the trial and for your continued patience. Octopus next stage recruiting well and expanding! In Octopus, we now have: ·...
The post Octopus Update April 2025 first appeared on UK MS Register Blog.
Read morePublished 07/04/2025 11:47:11
This year, the UK MS Register once again had the exciting opportunity to exhibit at the MS Trust Conference, a key event for the MS clinical community. It was an inspiring and engaging experience for all involved, as we showcased the work of the Register and engaged with experts, clinicians, and individuals impacted by MS. ...
The post The UK MS Register at the MS Trust Conference ’25 first appeared on UK MS Register Blog.
Read morePublished 10/03/2025 11:54:52
A short how-to guide for the UK MS Register questionnaires: Participant Questionnaire User Guide We ask our regular questionnaires twice a year, normally in the spring and autumn. If you have joined the Register then you are clearly interested in supporting research into MS. To have the best possible data available for researchers, we need...
The post Questionnaire Guide first appeared on UK MS Register Blog.
Read morePublished 28/02/2025 16:38:13
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,...
The post Spring Newsletter 2025 first appeared on UK MS Register Blog.
Read morePublished 17/02/2025 10:55:58
In this guest blog, Register participant Annie shares her experience of joining PPI group ‘the Brainstormers’: In 2006/7 I was diagnosed with primary progressive MS. I’m up for volunteering for anything that might aid the understanding and treatment of MS and I originally joined the MS Register in 2012, soon after its inception in 2011,...
The post Annie and the Brainstormers first appeared on UK MS Register Blog.
Read morePublished 23/01/2025 12:15:42
We are pleased to announce the start of 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 study will open new avenues for MS research by exploring a topic which has not yet had much attention – family...
The post New & Exciting Research: A Deep Dive into MS Families first appeared on UK MS Register Blog.
Read morePublished 17/12/2024 16:17:35
Here is a summary of the research we have been involved in over the past 12 months: Barriers and strategies to medication adherence amongst people with multiple sclerosis and cognitive problems This study investigated the adherence to disease modifying treatment (DMT) amongst people with Multiple sclerosis, and to identify the prevalence of issues with adherence....
The post 2024: A Year in Research first appeared on UK MS Register Blog.
Read morePublished 30/10/2024 14:21:26
The UK MS Register are now hosting a new questionnaire on MS and menopause. The questionnaire has been developed by Imogen, a PhD student at the Centre for Preventive Neurology at Queen Mary University of London. She is working with the UK MS Register on a study about the impact and experience of menopause for...
The post New Questionnaire: Menopause and MS first appeared on UK MS Register Blog.
Read morePublished 10/09/2024 14:00:35
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 post Autumn Newsletter 2024 first appeared on UK MS Register Blog.
Read morePublished 04/09/2024 15:43:15
Do people with MS do better on clinical trials, even if they aren’t selected to take a new treatment? Background Dr Rachael Kee is a Consultant Neurologist specialising in MS working in Belfast, Northern Ireland. She spent her PhD studying how the immune system can affect the brain in MS. Dr Ger Mullan is a...
The post New Questionnaire: MS and Clinical Trials first appeared on UK MS Register Blog.
Read morePublished 13/08/2024 09:27:56
The UK MS Register were pleased to take part in this year’s HDR UK Black Internship Programme. This initiative aims to transform opportunities for young black professionals in the UK and help them thrive in health data science careers. Earlier in the summer we welcomed two talented interns to the team: Name: Joy Amobi Project...
The post HDR UK Black Internship Programme first appeared on UK MS Register Blog.
Read morePublished 06/08/2024 10:35:32
MS Frontiers is the MS Society’s research conference. It takes place every two years, and was most recently held in July 2024 at the University of Liverpool. The conference is attended by scientists, clinicians and health care professionals and is the perfect opportunity for networking and sharing the latest advances in MS research. The UK...
The post MS Frontiers PPI Poster first appeared on UK MS Register Blog.
Read morePublished 16/07/2024 11:51:03
Susan Crane has been a member of the UK MS Register since 2018 and joined the Register PPI (Patient and Participant Involvement) group, the Brainstormers, in 2022. Since her diagnosis in 2005 Susan has been very active in the MS community, helping to set up a local group in London (West Central London) and being...
The post UKMSR Brainstormer Susan’s Aerial Fundraiser first appeared on UK MS Register Blog.
Read morePublished 05/06/2024 11:35:45
This week is Volunteer’s Week, where we celebrate the incredible contributions that volunteers make to communities across the UK. First started in 1984 by the organisation then known as Volunteering England, this week marks the 40th anniversary. Read more about Volunteers Week here. MS Volunteers We know volunteers make a huge difference to the lives...
The post Volunteers Week 2024 first appeared on UK MS Register Blog.
Read morePublished 20/05/2024 13:23:55
On Monday 20 May 2024 we mark Clinical Trials Day in the UK, an event organized and promoted by ACRP (Association of Clinical Research Professionals) since 2014. What is a clinical trial? In the most simple terms, a clinical trial is a type of research study which compares the effect of one test or treatment...
The post Clinical Trials Day first appeared on UK MS Register Blog.
Read morePublished 22/04/2024 08:00:01
This week we mark MS Awareness Week 2024 (22 – 28 April). Multiple Sclerosis (MS) is a neurological condition which is estimated to affect more than 130,000 people in the UK (MS Society). This week is a chance for those within the MS community to unite, share the realities of life with MS, and raise...
The post MS Awareness Week 2024 first appeared on UK MS Register Blog.
Read morePublished 18/03/2024 09:00:57
In this guest blog Nin shares her MS journey from diagnosis, to volunteering with Asian MS. Diagnosis I was diagnosed in March 2022. It happened really quickly and was very intense. It only took one week from my first exasperated symptom to my official diagnosis. I didn’t know anyone with MS and knew nothing about...
The post Nin Sambhi: Living with MS in the Asian Community first appeared on UK MS Register Blog.
Read morePublished 08/03/2024 09:01:30
International Women’s Day, marked every year on 8th March, is a day commemorated across the world where the social, economic, cultural, and political achievements of women are celebrated. The day also marks a call to action for accelerating women’s equality. IWD has occurred for more than 100 years, with the first gathering in 1911 supported...
The post Celebrating International Women’s Day: Remarkable Women of the UK MS Register first appeared on UK MS Register Blog.
Read morePublished 27/02/2024 12:40:27
The UK MS Register is based within Swansea University’s Population and Data Science faculty. The faculty team have recently been sharing blogs showcasing the career journey’s of some staff members. The Register’s own PI Dr Rod Middleton took part and shared his own journey into research, from beginning his career as an ITU nurse to...
The post My Journey into Research – Dr Rod Middleton first appeared on UK MS Register Blog.
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