Published 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.
Read morePublished 27/02/2024 12:25:53
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,...
The post February Newsletter 2024 first appeared on UK MS Register Blog.
Read morePublished 22/02/2024 11:38:34
The Queen’s Anniversary Prizes for Higher and Further Education celebrates the outstanding work of UK colleges and universities in transforming lives and communities. The Prize was recently awarded to Population Data Science at Swansea University, acknowledging the work of the world-leading SAIL Databank. Launched in 2007 as a pilot study SAIL brings together, links and analyses...
The post Queen’s Anniversary Prize 2023 first appeared on UK MS Register Blog.
Read morePublished 15/02/2024 16:56:16
The UK MS Register is a research project which collects real world data about living with MS in the United Kingdom. Whether you are a researcher who wants to use the data to answer an important question, a person with MS who wants to contribute to a study, or a health care professional who wants...
The post Love Data Week first appeared on UK MS Register Blog.
Read morePublished 14/02/2024 10:36:07
Navigating pregnancy with MS: The UK MS Pregnancy Register As of December 2023, we have recruited 223 participants to the UK MS Pregnancy Register since the study began back in 2021. We wanted to update you on what we’ve learnt so far. We set up the register to help answer some questions around MS and...
The post Update from the MS Pregnancy Register first appeared on UK MS Register Blog.
Read morePublished 12/02/2024 15:46:09
Work with the UK MS Register and use this ‘real world’ source of MS data to add vital evidence to your own MS research. The Participant Portal We have more than twelve years of deeply linked longitudinal and clinical data to help you with your MS Research. Clinical We work with more than 45...
The post Your research starts here… first appeared on UK MS Register Blog.
Read morePublished 09/02/2024 10:44:50
MS-Selfie – helping you to self-manage your MS If you are someone living with MS, MS-Selfie is for you. It is written by Professor Giovannoni (aka Prof G), a world-renowned MS expert and researcher with over 30 years of experience in MS and related disorders. Here are some reasons to check it out! Confidence to...
The post MS-Selfie first appeared on UK MS Register Blog.
Read morePublished 20/01/2024 12:03:10
We would like to thank participants answering questionnaires about their MS on the UK MS Register website and also those who have given consent for their medical records to be linked to the UK MS Register. The data you have all provided has helped us, and many other researchers explore a wide variety of questions,...
The post UK MS Register Publications first appeared on UK MS Register Blog.
Read morePublished 17/01/2024 13:17:41
What are the differences between people who develop MS earlier in life and those who develop it later? UK MS Register researcher Sarah Knowles has recently had a paper published which looks at MS when it develops in older adults compared to younger adults. Late onset MS, or ‘LOMS’, is often defined as MS that...
The post New Paper Published: Late Onset MS first appeared on UK MS Register Blog.
Read morePublished 16/01/2024 09:59:16
In 2022 we looked at almost 8000 thousand people who have given data to the Register about their historical smoking habits. This allowed us to conduct one of the largest research projects on smoking and MS ever. Dr. Jeff Rodgers, Senior Analyst, UK MS Register explains what we found in this video. Visit the MS Trust...
The post Smoking and MS: Never too late to quit first appeared on UK MS Register Blog.
Read morePublished 31/12/2023 13:53:07
It’s been 2 years since we launched the UK MS Pregnancy Register, and we wanted to let you know some of the findings that you have contributed to. When we set up this register to understand how women with MS in the UK approach and experience pregnancy, there were so many unknown unknowns. We...
The post UK MS Pregnancy Register first appeared on UK MS Register Blog.
Read morePublished 18/12/2023 08:00:01
Sites are contacting by phone or email those who may be eligible after completing the form. This email or phone call will be to discuss your answers in more detail, to see if you are suitable to take part. But this will take time and may not be this year. So we apologise if you...
The post Octopus Trial Update (as of 11-March-2024) first appeared on UK MS Register Blog.
Read morePublished 11/12/2023 17:31:42
The UK MS Register has been going for over 12 years with many of our participants with us since the very start. Thanks to all the answers to questionnaires that we receive every six months, we are able to write and collaborate on research about MS. This year we published five scientific papers (please scroll...
The post A great year for research for the UK MS Register, 2023 first appeared on UK MS Register Blog.
Read morePublished 14/11/2023 15:13:18
In early October the UK MS Register team travelled to Milan for the ECTRIMS conference (European Committee for Treatment and Research in Multiple Sclerosis) to share our research, learn from other projects, and make new contacts with collaborators from across the world. This annual event is the world’s largest MS research meeting, this year...
The post UK MS Register at ECTRIMS 2023 first appeared on UK MS Register Blog.
Read morePublished 24/10/2023 10:20:22
Guest blog by Register participant Michele focusing on how she uses her personalised feedback report in her MS appointments. I’m Michèle and have been signed up with MS Register for 18 months after seeing an article about the study in an MS Society newsletter in 2022. I was diagnosed with RRMS at the age of...
The post Making the MS Register Report Work for Me first appeared on UK MS Register Blog.
Read morePublished 18/10/2023 14:16:49
A poster by UK MS Register researcher Sarah Knowles which was recently presented at the ECTRIMS conference in Milan. Sarah’s work explores the potential impact of hormone replacement therapy on MS symptoms.
The post Poster: Examining the impact of HRT on patient reported outcomes in women with MS first appeared on UK MS Register Blog.
Read morePublished 28/09/2023 08:53:48
Our new collaborative paper working with four other MS Registries in Europe (Sweden, Czechia, Denmark and Germany ) show how different healthcare systems approach the classification of Secondary Progressive MS (SPMS) and treatment differences. Data from over 60,000 people with MS were used to investigate how Secondary Progressive MS (SPMS) is diagnosed and treated across...
The post Collaborative paper with four other MS Registries in Europe: SPMS and treatment differences first appeared on UK MS Register Blog.
Read morePublished 26/09/2023 15:24:33
Written by the MS Society for their news pages A new study from the UK MS Register investigated how we can use information provided directly by people with MS to look at MS progression. Patient-reported outcomes (PROs) are pieces of information someone gives about their own health through questionnaires. For example, information about their symptoms,...
The post MS SOCIETY BLOG: New research suggests self-reported information could help predict MS progression first appeared on UK MS Register Blog.
Read morePublished 12/09/2023 11:00:54
Welcome Hello and welcome to the September 2023 edition of the UK MS Register newsletter. In this edition we share a roundup of the latest papers we have had published, a rundown of events we have attended and have coming up, and some general useful information. There are over 26,000 people who have interacted...
The post September Newsletter 2023 first appeared on UK MS Register Blog.
Read morePublished 01/09/2023 14:34:18
In August 2023 we were joined by more than 100 attendees for the Progressive MS and Clinical Trials webinar. This online event was dedicated to exploring the latest advancements in research for Progressive Multiple Sclerosis. The webinar was a unique opportunity to hear from leading experts in the field including Dr Klaus Schmierer, Dr Jeremy...
The post Progressive MS and Clinical Trials Webinar first appeared on UK MS Register Blog.
Read morePublished 22/08/2023 15:25:19
In July 2023 some of the MS Register team travelled to London to host a two-day Data Academy. Increasingly research into MS requires individuals to have skills in manipulating and analysing large sets of health care data. In order for research to be of a high quality, and for researchers to get the most out...
The post UK MS Register Data Academy 23 first appeared on UK MS Register Blog.
Read morePublished 22/07/2023 14:34:26
Guest Blog by member of the PPI Group, The Brain Stormers, Susan Crane There are 40 symptoms of MS and 36 symptoms of menopause. Remarkably, 20 symptoms of menopause are also symptoms of MS. I’ve had 14 of the MS symptoms and 25 of the menopause symptoms. What joy! I was diagnosed the Friday before...
The post MENOPAUSE & MY MS first appeared on UK MS Register Blog.
Read morePublished 12/07/2023 14:49:22
In June 2023 Asian MS hosted a ‘Spotlight on MS Fatigue’ webinar. Asian MS is a national group providing tailored and culturally-sensitive services for Asian people with MS, their carers, friends and family. The webinar aimed to help attendees learn more about MS fatigue and possible strategies to cope with it; the webinar was hosted...
The post Spotlight on MS and Fatigue first appeared on UK MS Register Blog.
Read morePublished 24/05/2023 16:47:07
Depression is unlikely to play a role in making disability progression worse in people with multiple sclerosis (MS), a new study published in Scientific Reports has found. Researchers from Swansea University, University of Cambridge and Queen Mary University of London conducted the UK-wide study to find out if depression and/or anxiety put people with MS...
The post Does depression increase risk of MS progression? New study published first appeared on UK MS Register Blog.
Read morePublished 03/04/2023 12:36:27
Associate Professor Rod Middleton leads the UK MS Register. With over 17,000 people with MS signed up, it’s building a true picture of what it’s like to live with MS in the UK. We spoke to Rod to find out what led him there, and what the future of the Register might have in store....
The post MS Society Blog: Meet the intensive care nurse turned researcher behind the UK MS Register first appeared on UK MS Register Blog.
Read morePublished 15/03/2023 10:51:47
Participants on the Register may remember seeing a food questionnaire on the hub page last year, its official name is the ‘EPIC Norfolk food frequency questionnaire’ (FFQ), which took around 40-45 minutes to complete. The survey assessed how often participants consumed certain food groups, such as fruit and vegetables, meat, fish, dairy products, grains etc....
The post Diet and MS – One of the largest studies thanks to many of you! first appeared on UK MS Register Blog.
Read morePublished 14/03/2023 10:08:32
Rod Middleton talks to Agne Straukeine who runs a podcast called ‘BeWellwith MS’ which discusses science and ways to preserve brain health and improve quality of life living. She is also a neurologist in Torbay and South Devon NHS Foundation Trust, which is one of the MS Register’s partner sites. In this episode, they delve...
The post Let’s Talk Smoking and Alcohol first appeared on UK MS Register Blog.
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