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A great year for research for the UK MS Register, 2023

Newsletters, Research

Photo of a torso of a man in a white shirt holding a piece of paper with the word 'published' written on it.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 down to see a glossary which includes a definition of what a scientific paper is)

Here is a summary of each of the papers:

Proportion and characteristics of secondary progressive multiple sclerosis in five European registries using objective classifiers

This study used information from MS databases in five European countries: the UK, Germany, Sweden, Denmark, and Czechia. The goal was to investigate how doctors diagnose Secondary Progressive Multiple Sclerosis (SPMS) in these countries. We looked at anonymised data* from 61,900 patients who had either Relapsing Remitting MS (RRMS) or SPMS. We looked at details like age, gender, disability level (measured by the Expanded Disability Status Scale), and data on MS drug treatments. Using various computer models, we looked to see if the technology could see if the patients had SPMS or RRMS, comparing the computers decision with the clinical diagnosis made by a doctor. The computer models suggested that all the MS databases had more patients with SPMS than the doctors had clinically diagnosed. The difference was most evident in the UK.
What this means: It appears that SPMS is being under diagnosed by clinicians – but that patients are still being treated as for RRMS in some cases. This has implications for the future for the types of drugs that are in use and our overall understanding of MS.

The impact of healthcare systems on the clinical diagnosis and disease-modifying treatment usage in relapse-onset multiple sclerosis: a real-world perspective in five registries across Europe

This was the second paper to come from the collaboration with five European MS Registers (UK, Germany, Sweden, Denmark and Czechia). Using a computer model the researchers looked at how Secondary Progressive MS (SPMS) was diagnosed by doctors across Europe.  The researchers found that SPMS was less frequently diagnosed than Relapsing Remitting MS (RRMS). It also found that each country prescribed disease modifying treatments differently. 

What this means: This study shows that how MS is diagnosed/classified and treated can vary a lot depending on where you live. It also shows that it’s important for healthcare systems to allow for some flexibility in uncertain cases to ensure that people get access to the right treatment.
Read the full paper here: https://journals.sagepub.com/doi/10.1177/17562864231198963

 

Patient-reported outcomes in multiple sclerosis: a prospective registry cohort study
In this study we looked at 15,976 participants data from the UK MS Register gathered over 11 years. As you know, we ask regular questionnaires and these are officially called ‘Patient Reported Outcomes (PROs)’. Our goal was to see how well these surveys can show changes in physical disability over time, compared with clinical tests that have to be done by doctors. We found that these patient surveys are just as good as the formal clinical tests in catching changes. It’s easier and cheaper to collect this information from patients than bringing them to the hospital. We also discovered that the amount of disability reported by patients at the beginning of the study is a good indicator of how much disability they might have in the future. In this paper we used a huge amount of data and special mathematical modelling to make sure our findings are reliable.

What this means: This study is important because it adds to our understanding of the relationship between what patients tell us, and what doctors observe. It shows that it is possible to notice signs of worsening disability earlier by listening to the patients’ experiences, maybe even before their doctors see it.

The ADAMS Study LogoADAMS project: a genetic Association study in individuals from Diverse Ancestral backgrounds with Multiple Sclerosis based in the UK

This paper shares some early findings from the ADAMS project, a study that is looking to understand how genes cause Multiple Sclerosis in people from different ancestral backgrounds. Most genetic data that has been collected and used in research so far has been from people from white European ancestry, and this project is trying to expand this data set. The ADAMS project is consenting people through the UK MS Register and sending them kits so they can share their genetic material (saliva) which is then studied. So far they have collected information from more than 682 people.

What this means: Finding out if there are differences in MS severity amongst people from other ethnic backgrounds is just one of many potential outcomes of this important study.
Read the full paper here: https://bmjopen.bmj.com/content/13/5/e071656

Early depressive symptoms and disability accrual in Multiple Sclerosis: a UK MS Register study

Researchers in this study wanted to find out if there was a link between depression and disability in people with MS. The team analysed data from 862 people with MS. They found that what seemed to be a link between early depression and higher disability level later on disappeared when they took into account the earlier level of disability. So rather than depression making disability worse, these results are likely to reflect the significant challenges of living with MS, with greater disability causing people to feel more depressed.

What this means: The findings of this paper was that depression is not linked to disability but that increased disability probably leads to depression.
Read the full paper here: https://www.nature.com/articles/s41598-023-34545-6

 

Glossary

Published papers: In order to share findings, researchers write a ‘scientific paper’ that is sent to a journal (like a magazine) for ‘peer’ review. This peer review process means that other scientists, who are experts in the field look at the research and check it to make sure it is good science and accurate. If the experts approve then the paper gets published and it can be regarded as a trustworthy source of information. Peer review helps maintain the quality and reliability of scientific knowledge that gets shared with the wider world.

Scientific poster: A scientific poster is also reviewed by peer review (see published papers). They have a set structure including, background method, results and conclusion.  If it is approved and accepted, then it can be presented at a conference. They are very short and meant to show quick novel research projects or ideas. They tend to be on A0 size paper and have a combination of graphics and text.

Aggregated Data: A summary of the data shown in counts, averages, sums, minimum, maximum etc and presented in a combined and simplified form.

Anonymisation happens by changing or taking out personal information, or by using special software to hide private details. Yet, researchers can still use this data for answers without knowing who’s who. This helps researchers learn from data while keeping it private.

Anonymised results are those that don’t reveal any personal details and can be shared publicly, like in scientific journals. For example, a statement like “We studied 1000 people with depression, and 42% had tried cognitive-behavioural therapy” is considered anonymised because it doesn’t provide any specific information that could identify the individuals involved.

And finally, a video round up of our achievements this year:

UK MS Register at ECTRIMS 2023
UK MS Pregnancy Register