The Hidden Costs of multiple sclerosis (MS) 

New research has shown for the first time what people with peoplewith MS have had to spend themselves to maintain an independent standard of living.

The study from Swansea University Medical School has found that people with MS and their families are having to fund up to 75% of non-medical costs from their own pockets. Previous research in this area has only looked into the cost of drugs and overnight stays in hospital. The cost from people’s own pockets has not been looked into in any detail before.

What is Multiple Sclerosis? 

Multiple Sclerosis (MS) is an autoimmune neurological disorder that is the commonest cause of disability in adults of working age.  MS affects more than 120,000 people in Britain and around 2.5 million people worldwide. The symptoms of MS have a profound effect on people’s day to day lives due to the physical and cognitive effects of the disease that can lead to loss of employment and a profound personal impact. MS is a particularly harsh condition, as can affect people just at the point that they are typically starting to really flourish in their careers and start families. Costs in MS have focused on the high cost of treatments that mainly target early MS and the personal costs have not being looked at in detail.

The Study 

The UK MS Register is a research database operated by Swansea University and funded by the MS Society. Data is routinely collected from people with MS and from their doctors and nurses both online and through their specialist. It’s one of the largest databases globally with real world data in MS. In partnership with Sanofi a survey about the cost of MS both to society but also to the person was sent to people with MS by the UK MS Register. Five hundred and thirty seven people with MS completed the survey over 6 weeks and this was combined with data that the person had already given to the MS Register. This included: the severity of their disease, type of MS, age, gender, employment status and their ‘normal’ quality of life.

What did we find? 

We divided costs into medical and non-medical. Medical costs include: admissions to hospital, rehabilitation, blood and other tests such as X-Rays and MRI scans. Non-Medical costs include: adaptations to houses – including fitting of handrails and extensions, wheelchairs and car adaptations.

The medical costs, paid for by the NHS or social care were £3,244 per person per year and the costs increase as the disease became more severe. For the non-medical costs 75% came of out peoples own pocket (£939 per person per year), these costs dramatically increase with increasing disease severity.

These adaptations enabled people with disabilities either to stay at home or get out of hospital more quickly, safely and efficiently, indirectly reducing costs to the NHS.

The MS Register is open to new participants, if you have MS and live in the UK, sign up today and help make sense of MS!

 

Return to the MS Register Hub

Belfast Patient Experience Questionnaire

Dr Gavin V McDonnell, Belfast Health and Social Care Trust

MS is a complex and challenging condition for many if not all patients. A range of healthcare professionals can play key roles in treatment and management. We are interested in establishing across the UK just who patients see when attending outpatient clinics and whether they feel that others should be involved to meet their needs best.

Over the past 20 years, there have been significant and welcome developments in disease modifying therapies (DMTs). Increasing choice can however lead to complexity for patients in particular and their clinicians. We are interested in understanding how patients perceive the decision making process around treatments and how involved and informed they feel.

MRI (Magnetic Resonance Imaging of the brain with or without spinal cord) has had an important role in the diagnosis of MS for over 25 years and increasingly it is now used to assess disease stability and the safety and effectiveness of treatments. We are keen to establish how interested patients are in seeing their own MRI scans at clinic appointments and what their current level of access is.

Finally, we want to understand the patient perception of lumbar punctures (LPs/spinal taps). This can be an uncomfortable procedure for patients but does play an important supportive role in the diagnostic process. However it is also being suggested that lumbar punctures and analysis of the spinal fluid (also known as CSF) obtained could be of value beyond diagnosis, providing prognostic (predictive) information, assessing treatment effectiveness and guiding future treatment choices. Given the nature of the procedure we are keen to establish whether it would be of practical utility by testing its acceptability to patients.

Our goal is to obtain information across the UK that could improve service developments for patients with MS, improve the patient experience and guide future research and treatment approaches. Specifically we would like to test your experience of outpatient clinics, access to MRI scans, the information and decision making around disease modifying therapies (DMTs) and your attitude to the potential use of lumbar punctures (LPs/spinal taps) to improve our understanding of the processes underlying MS and potentially assess the effectiveness of treatments.

By Dr Gavin V McDonnell, Belfast Health and Social Care Trust

 

Return to UK MS Register Hub

A trial-ready community

The Stop-MS appeal by the MS Society aims to be in the final stages of testing treatments (to slow down or stop disability progression) for everyone with MS by 2025. They plan to raise £100 million and part of this funding will go towards the development of an “MS Trials Platform”.

The ambition of the MS Trials Platform is to develop treatments up to three times faster than is currently done now. It will provide a structure to test new and re-purposed drugs (those that are already used in other conditions) more quickly and cheaply. It also aims to have a community of people ready who are interested in MS Trials by having them pre-register so they can be contacted if they are eligible.

Another aim of the MS Trials Platform is to ensure that it is accessible to as many people with MS as possible.

The MS Register will be asking their participant’s to answer a questionnaire on their views on the idea of the MS Trials platform, what might make people decide to register and if they did, how they might like to be communicated with regarding potential trials.

 

Return to the UK MS Register Hub

Flexibility of thoughts

We know MS can cause spasticity in your body, maybe this can happen with thought processes too.

Our colleagues in the Institute of Mental Health in the University of Nottingham are looking into whether there could be justification for trialing a therapy for people with SPMS which aims to target ‘thinking inflexibility’ which can lead to becoming caught up in negative thoughts.

What do we mean by flexible thinking?

Flexible thinking is the ability to focus and engage fully in what we are doing, rather than being pushed around by our thoughts and feelings, and to make more effective choices based on the things that really matter to us

How flexible is your thinking?

The purpose of this project is to understand the relationship between anxiety, low mood and thinking flexibility in those with SPMS.

Those who are particularly inflexible may become “caught up” in negative thoughts, and feel these need to be controlled which restricts their ability to choose how to behave. However, those with greater thinking flexibility may be able to continue to live fulfilling and productive lives whilst allowing themselves to experience the full spectrum of pleasurable and distressing thoughts and sensations.

Return to the MS Register Hub

How MS affects mood

Patient update: How multiple sclerosis affects mood

I am Professor Dawn Langdon and with Dr Gurpreet Reen, have received a grant from the MS Society to use data from the UK MS Register to investigate mood in multiple sclerosis. We are both psychologists working at Royal Holloway University of London. As you know, people with MS are more likely to experience anxiety and depression than the general population and this affects their lives in a negative way, including employment and how well they manage their disease.

The UK MS Register is a very special set of data because it is collected from people with MS, recording their own experiences. It is also a very large set of data. In order to understand the impact of MS on mood using the UK MS Register data, we needed to identify complete data on mood and other related aspects of people’s lives. These were age, education, employment, disease subtype, physical impact, and psychological impact.

8,812 people with MS (of which 6,397 were female) had entered complete data on all these things. 5,541 had relapsing remitting MS, 2,085 had secondary progressive MS and 1,386 had primary progressive MS. About half of the people with MS reported raised levels of anxiety and also about half reported raised levels of depression. This is similar to other smaller studies which have previously been published.

We were able to use multiple regression, a statistical procedure which evaluates how different variables affect a particular variable of interest. We looked to see which variables were associated with anxiety and depression in MS. We are working on a scientific paper which we will submit to a peer review journal and will provide a more detailed update in due course.

Return to the MS Register Hub

How sedentary is your lifestyle?

In recent years there has been a growing amount of research into sedentary sedentarybehaviour  (large amounts of sitting and little physical exercise). The research is showing that there a many health risks associated with prolonged and excessive inactivity.

The University of Birmingham is working to find out more about the types of activities people with MS do and how these activities are associated with their MS experience.

There is some evidence that interventions to encourage people with MS to move more or sit less can have benefits, but we also know that this can be very difficult to do.  At the moment, we do not know what the most appropriate activities are to advise people with MS to do to achieve these benefits.  Finding out more about the types of activities people with MS do and how these activities are associated with MS experience will help us to develop interventions specifically aimed at people with MS.

The questionnaire will ask you about the activities you do while sitting down and while moving around.  We are asking you about a range of different activities, such as watching tv, household chores, walking, and exercise.  We are interested to hear how often you do these activities.  It can take up to 25 minutes to complete the questionnaires.  With these questionnaires, we are exploring the types of activities people with MS do during a regular day or week.  We are also examining how these activities are related to the way you experience your MS.

We will of course feed back the results to you once they have been analysed!

 

Return to the MS register Hub

Update on Vitamin D questionnaire

 

SunshineLast year we hosted a questionnaire in collaboration with Queen Mary University of London. The study looked  at vitamin D levels in the UK MS population. Vitamin D is one of the top research priorities for people living with MS and results from this study will provide information about the vitamin D status amongst the population.

The last vitamin D sampling kits were sent out just before Christmas. Whether your contribution was through completing the study questionnaire or taking part in the remote sampling part of the study, we really appreciate your help.

We are happy to say that almost two-thirds of the participants who were sent a sampling kit have now returned them to us. For anyone who has received a sampling kit from us earlier this year and not got around to doing your samples, remember – it is not too late! The more samples we get back the better and we will be continuing to collect samples over the next couple months.

Thanks again for your part in this important MS research – we look forward to sharing the results of this study with you in a few months!

Participant Feedback on the MS Register: 1 Year Since Website Relaunch

  1. How long have you been a participant on the MS Register?

Approximately 8 years

  1. How was it you came to be involved with the MS Register?

Advert via Facebook – I think – sorry long time ago now

  1. Why do you feel it’s valuable to contribute data to the MS Register?

I am 100% honest about how my MS affects me.  I don’t feel I am put on the spot or being judged.  If it helps any research – then that can only be a good thing. No needles, poking or prodding in this research,  so happy to answer and be part of this register

  1. Do you find the portal to be a useful, personal tool for your MS?

It is easy to use and it is good to look back at previous answers to see how, if and when things have changed.

  1. Do you have any other positive experiences of the Register that you’d like to share?

It is good to feel as if you may somehow help researchers understand what living with MS is like.

MF, Hampshire

 

  1. How long have you been a participant on the MS Register?

I do not know, I believe ever since the Register started I think

  1. How was it you came to be involved with the MS Register?

I have always followed the MS Society and when the register commenced or as soon as I was invited I accepted that opportunity

  1. Why do you feel it’s valuable to contribute data to the MS Register?

I believe that if I can add or offer anything to aide the research with regard to MS and its cure or symptom relief I would like to do that and always believe in giving something back

  1. Do you find the portal to be a useful, personal tool for your MS?

I find the portal interesting more than useful personally

  1. Do you have any other positive experiences of the Register that you’d like to share?

I have nothing particular to offer. I do believe the questionnaires need to be reviewed more diligently and cross referenced to the various different entities that are looking for the appropriate information and feedback as it does become somewhat repetitive and unnecessary answering the same question in principle a number of times when completing the questionnaires each time.

M. Pearce, Suffolk

 

  1. How long have you been a participant on the MS Register?

I can’t exactly remember how long I’ve been on the MS Register but I guess it’s about 7 years or so.

  1. How was it you came to be involved with the MS Register?

I received an email from the MS Register asking if I would participate. It seemed like a good idea and I’ve been participating ever since.

  1. Why do you feel it’s valuable to contribute data to the MS Register?

Anything that helps research into MS that may eventually make life easier for MS sufferers or even find a cure has to be a good thing. It’s no good burying your head in the sand and let others do it.

  1. Do you find the portal to be a useful, personal tool for your MS?

In a way. I appreciate researchers are looking for one’s experience within a snapshot of time but I feel like I want to say more. I find it a bit frustrating that I can’t expand on the answers. Having said that, having been involved in conducting surveys myself, I realise researchers don’t want people ‘rabbiting’ on. Not only do I have great difficulty walking, I can no longer drive due to MS. After 50 years of driving I find this has taken away yet more of my independence. Maybe the surveys aren’t interested if one can get around outside but it’s all part of living with MS.

  1. Do you have any other positive experiences of the Register that you’d like to share?

Some of the surveys provide results in the form of a graph. I find these particularly useful to compare my well-being from a few months, or years ago.

B. Eaton, Hampshire

The Latest Window of Questionnaires is Now Open!

It’s that time again – the next window for completing questionnaires is open. As you know we ask our regular surveys every six months. Please continue to complete these as they are important for all our research.

We also have the following guest questionnaire available for you to complete:

  • Wellbeing & MS (with Exeter University). Comprising 4 separate surveys, there are 57 questions in total and it may take up to 40 mins to complete. This research explores the link between value-for-money treatments and wellbeing in people with MS.
  • We need your EDSS. When completing surveys please remember to update your EDSS. Your EDSS score is very important to MS researchers, particularly for selecting study participants and determining those eligible for DMTs (Disease Modifying Therapies). This can be found on the bottom left of the survey list. You can also find it by clicking here.

And don’t forget, we always love hearing from you. It’s now been a whole year since we launched the new-look portal. Please tell us what you think of it… contact@ukmsregister.org

All questionnaires are available here… https://www.ukmsregister.org/

£1 Million Boost For Research Into Living With Multiple Sclerosis

The UK Multiple Sclerosis (MS) Register, based at Swansea University, has been awarded just over £1m investment from UK charity, the MS Society.

The Register is a ground-breaking medical research study that seeks to collect information from people with the disease about what it’s like to live day-to-day with Multiple Sclerosis. Established in 2011, it was the first UK-wide register of its kind for MS. It’s estimated that over 100,000 people live with the disease in the UK.

MS is one of the most common non-traumatic causes of disability in young adults worldwide. MS is a disease of the central nervous system that has a huge impact on the life of people affected by the disease. People with MS may suffer from physical disabilities, visual disturbances, fatigue, depression or cognitive dysfunction. All of which can influence activities of daily living, work ability, social participation and overall quality of life.

 

Through gathering large amounts of information from people with MS the Register is able to provide extremely rich, anonymised data for the purposes of medical research, which, it is hoped, can unlock some of the mysteries behind the disease. The Register collects data from three different sources;

  1. Self-reported outcomes from people with MS via website surveys.
  2. Clinical records from 47 NHS partner sites.
  3. Other routinely collected data from health and wellbeing services (e.g. General Practice).

The MS Society has remained the principal funder since its inception in 2011. Recognising the contribution of the Register to MS Research, Susan Kohlhaas, Director of Research at the MS Society said “we continue to be incredibly excited about the potential the Register holds in transforming our understanding of MS. Data science is an area that we as a country need to build capacity in… big data will revolutionise our understanding and treatment of diseases.”

The MS Register is part of the wider Population Data Science theme at Swansea University’s School of Medicine. It is a multidisciplinary theme of international standing, conducting Population Health Studies including clinical trials. The Register benefits greatly from this location owing to the world class expertise and collaborative research culture. This has evolved from pioneering work at Swansea in the 1990’s on linking health data sets and defining rigorous standards for medical records.

With this investment from the MS Society the Register hopes to further develop its platform, enhancing its usability and increasing the amount and type of data it collects. The Register continues to build on last year’s website re-launch, to improve its online interface with users and provide feedback to participants.

The Register is now looking to develop a similar interface for clinicians at its 47 partner NHS site locations. This will allow specialists in MS to see how the condition is affecting the day-to-day lives of patients away from the clinic, becoming an important tool for discussion around treatment options and lifestyle.

Other technical advancements are also in the pipeline in terms of the Register’s ability to capture more complex data types like MRI scan data. A ‘Machine Learning’ tool is also planned to extract and organise information directly from clinician’s letters to ease any administration burden for NHS staff.

People with multiple sclerosis (or people acting on behalf of a person with MS) can sign up to the UK MS Register by visiting www.ukmsregister.org .

Thank you for completing My MS My Needs 3.

The UK MS Register would like to share with you a message from Caroline Howlett of the MS Society’s Research Network…

‘You have spoken! Over 8,000 of you completed this year’s My MS My Needs survey. As a Person with MS and lay member of the Research Network working with the survey team, I’d like to extend a big ‘Thank You’ to you all.

Following on from your hard work, the team are now at the steep cliff face of analysing what this dataset tells us; one that’s large enough to find statistically, meaningful differences between bigger groupings such as regions of the country, but to also look into the findings in smaller, but key equality groupings of ethnic minorities and sexual orientation.

As a result, the MS Society will be able to track changes with the previous two studies’ results, likewise to see what issues remain of primary concern to us. Your time spent completing the detailed questionnaire will help make a real difference: Future Society policies will be shaped, as will campaign priorities.’

As the impact of these findings is realised, we at the UK MS Register will keep you updated. Thank you for your participation!

 

Imperial College London Drug Trial at Hammersmith Hospital

Division of Brain Sciences, Department of Medicine, Hammersmith Hospital Campus

Burlington Danes Building, Du Cane Road, London W12 0NN. Telephone number: 0207 7594 2855

Version 10, dated 14/06/2019

IRAS 218514

REC 17/LO/0566

An experimental medicine study to validate the 18 kD translocator protein (TSPO) as a novel neuroimmunomodulatory target in multiple sclerosis

Participant Information Sheet

Who is organising this study?

The Chief Investigator is Paul Matthews, Professor of Clinical Neuroscience and Head of the Division of Brain Sciences, Imperial College London. The Sponsor of the study is Imperial College London. The study is funded by the Medical Research Council (MRC).

What is the purpose of the study?

XBD173 is a drug which temporarily changes the activity of a protein called the 18 kD Translocator Protein (better known as TSPO) in the brain. TSPO could have a role in dampening inflammation in the brain. We would like to know whether XBD173 could be a potential treatment for patients with secondary progressive multiple sclerosis (SPMS).

Why have I been invited?

You have been invited because you have been diagnosed with SPMS or because you are a healthy volunteer.

Do I have to take part?

No, it is your choice. If you do decide to take part you will be given this information sheet to keep and be asked to sign a consent form. You will have as much time as you like to decide if you want to participate in the study. You are free to withdraw at any time, without giving a reason and your medical care will not be affected by that decision.

What will happen to me if I take part?

Screening (approximately 1 hour)

This will take place at the Clinical Research Facility (CRF) at the Hammersmith Hospital. If you agree to take part in the study, we will ask you some questions about your health, medical history, carry out a physical examination, vital signs, height and weight and review your notes to ensure that it is safe to enroll you. If so, we will take approximately 55 ml blood from you (around 4 tablespoons ). We will test your blood to learn what kind of TSPO gene you carry, as this affects how you might respond to these drugs. We also will perform “routine” blood tests before inviting you to take part in the study, including blood count, kidney and liver tests. When we have the results of the blood tests, we will then telephone you to let you know whether we are able to include you in the study. If your blood results show an abnormality, we may not be able to include you. However, we might invite you to come back at a later date to repeat the blood test. If it has returned to normal when we repeat it, we may then be able to include you in the study.

First study visit

Approximately 4 weeks later, we will invite you back to the CRF at the Hammersmith Hospital. We will ask you some questions about your health and perform a physical examination which will include listening to your heart and feeling your tummy. For women of childbearing age, we will also perform a urine pregnancy test. We will take another blood test of approximately 200 ml (approximately 4/5 of a cup).

After these tests, you will be given the first tablet of XBD173 to take whilst you are at the CRF, and will be monitored for at least 4 hours before you leave the CRF.  During the following week you will take a further 6 tablets of XBD173.

Monitoring telephone calls

If you are a healthy volunteer and experience any adverse reaction to the drug during the study, or have any medical concerns, you can contact the Principle Investigator Dr David Owen on 07801 140 800. If you are a SPMS patient, you can call the official mobile telephone number attached to the Multiple Sclerosis clinical trials team on 07779 106 743.

Second study visit  

6 days after the first visit, you will take your final dose of the study drug and we will invite you back to the CRF at the Hammersmith Hospital. We will repeat the procedures of the first study visit: we will ask you some questions about your health and perform a physical examination, perform a urine pregnancy test on women of childbearing age, and take another blood sample of approximately 200 ml (approximately 4/5 of a cup).

Reimbursement

You will be reimbursed £300 for participation in the study, as well as for reasonable travel expenses. If you do not complete the study you will be reimbursed according to how much of the study you completed.

What are the possible benefits of taking part?

The study will not benefit you.

What are the possible disadvantages and risks of taking part?

XBD173

XBD173 is a drug which was initially developed by the pharmaceutical company Novartis to treat anxiety. Novartis stopped developing XBD173 because it did not appear to relieve anxiety well. However, during the time that Novartis were testing XBD173, it was used in several research centres in Europe and the United States and given to hundreds of patients with generalised anxiety disorder and to healthy volunteers for up to 6 weeks at a time. In this study you will take one dose every morning for a week.

When XBD173 has been given to healthy volunteers in earlier studies, the most common side effects were abdominal symptoms (such as diarrhoea) and nervous system disorders (such as headache). However, these side effects were not severe, and were just as common in volunteers in the same study who only received a placebo (dummy drug) instead of XBD173.

Venous Cannulation

Insertion of a cannula (a tiny, short plastic tube into a vein) may cause brief discomfort as the cannula penetrates the skin, similar to the discomfort you have when having an injection.  We will use the cannula to take blood samples during the study visit. Risks of any cannulation include minor local bleeding and bruising.

Using contraception

If you agree to participate in the study, you must use appropriate contraception during and for 7 days (one week) after participation in the study if there is a risk that you or your partner may become pregnant. This applies to both male and female participants.

The appropriate methods of contraception are:

  • Complete abstinence
  • Injectable progestogen
  • Implants of levonorgestrel
  • Estrogenic vaginal ring
  • Percutaneous contraceptive patches
  • Intrauterine device (IUD) or intrauterine system (IUS) that meets the <1% failure rate as stated in the product label
  • Male partner sterilization (vasectomy with documentation of azoospermia) prior to the female subject’s entry into the study, and this male is the sole partner for that subject. For this definition, “documented” refers to the outcome of the investigator’s/designee’s medical examination of the subject or review of the subject’s medical his
    tory for study eligibility, as obtained via a verbal interview with the subject or from the subject’s medical records.
  • Double barrier method: condom and occlusive cap (diaphragm or cervical/vault caps) plus spermicidal agent (foam/gel/film/cream/suppository)

These allowed methods of contraception are only effective when used consistently, correctly and in accordance with the product label.

If you have any questions about this please ask the study nurse or doctor.

Abstinence from alcohol

You will be required to abstain from alcohol for the during of dosing. This means that you are not allowed to drink alcohol for the 7 days during which you are taking XBD173.

What if something goes wrong?

Imperial College London holds insurance policies which apply to this study.  If you experience harm or injury as a result of taking part in this study, you will be eligible to claim compensation without having to prove that Imperial College is at fault.  This does not affect your legal rights to seek compensation. If you are harmed due to someone’s negligence, then you may have grounds for a legal action.  Regardless of this, if you wish to complain, or have any concerns about any aspect of the way you have been treated during the course of this study then you should  contact the Chief Investigator of the study, Paul Matthews (020 7594 2855, p.matthews@imperial.ac.uk), or the study co-investigator, David Owen (020 7594 7050, d.owen@imperial.ac.uk). You can also contact the 24-hour emergency number (07779 106 743), which is an official mobile telephone number attached to the Multiple Sclerosis clinical trials team. You can also contact the Patient Advice and Liaison Service (PALS) (020 3313 0088). The normal National Health Service complaint mechanisms are also available to you.  If you are still not satisfied with the response, you may contact the Imperial Academic Health Science Centre AHSC Joint Research Compliance Office (020 7594 1872).

What will happen if I don’t want to carry on with the study?

This research is voluntary and you are free to withdraw at any time, without giving a reason. Any stored blood or cells that can still be identified as yours will be destroyed if you wish.

If for any reason you are no longer able to consent due to ill-health we will withdraw you from the study. We will keep the data and stored blood and cells you donated and use them in the study. We will make sure you understand this when we take consent before the study begins.

What will happen if there is anything wrong with my results?

If the tests we do reveal unexpected abnormalities, we will discuss them with you and, if you allow us, we will notify your GP.

Will my taking part in this study be kept confidential?

All information that is collected about you during the course of the study will be kept confidential to the extent permitted by law. If you join the study, some parts of the data about you that is collected for the study will be looked at by authorised persons at Imperial College London.  They may also be looked at by representatives of regulatory authorities and by authorised people from the Trust and other designated academic researchers. The reason for this is to check that the study is being carried out correctly. Everyone involved directly in the study has a duty of confidentiality to you as a research participant and will take efforts to ensure that nothing that could reveal your identity will be disclosed outside the research site.

What will happen to my samples?

The study information will be anonymised before they are accessed for use in research.

Anonymised means these researchers will not be able to identify you as your personal details will have been removed from the sample and information we send them. To ensure the greatest benefit from your contributions, we also may share the anonymised data with other researchers.

Your blood samples will be analysed in a facility designated by the study team. The tests performed will include looking at genes and how they are expressed in your blood cells. No one will use the genetic data to try to diagnose another disease or to identify you.

Some samples also will be sent to the Hospital laboratory to perform routine tests. Unused samples will be frozen and stored and may be used for future research, which may include sending the samples to collaborators or others who may perform analyses. Any samples sent in this way will also be anonymised.

What will happen to the results of the research study?

The results of this study will be published in a medical journal. We intend to share results from the study with you and others who are participating, but you will not be identified by name in any report or publication.

Who is organising and funding the research?

The project is organised by the Chief Investigator, Paul Matthews, who is an employee of Imperial College London. No member of the research team is being paid based on the recruitment of people for the study. The study is being funded by the Medical Research Council.

Who has reviewed the study?

This research study has been reviewed by an ethics committee – a committee of people separate from your doctor, whose primary concerns are the safety, rights and welfare of patients on this study. The West London GTAC Research Ethics Committee has reviewed and approved all written materials about this study including this information sheet.

Contact for Further Information

Please ask any questions now that you wish to. A copy of this information and of the consent forms will be given to you to keep. If any questions occur to you later, or you have other concerns or would like to discuss any aspect of the study, please contact the following persons:

Dr. David Owen (Senior Lecturer and Honorary Consultant, 07801140800) or Prof. Paul Matthews (Chief Investigator, 0207 594 2855), 5th Floor Burlington Danes, Building Hammersmith Hospital, Du Cane Road, London W12 0NN

The MS Society Declares Future Funding for the Register

We are delighted to announce that the MS Society have agreed to continue their support for the UK MS Register. The current arrangement, due to expire in July 2019, has been renewed for a further 3 years which will see the Register through its 10th anniversary year in 2021 and on to 2022.

Based at Swansea University, the project has been run in partnership with the MS Society since our beginnings. This collaboration has been instrumental to our success; from our creation to a world leading medical registry at the forefront of MS research.

Recognising the contribution of the Register to MS Research, Susan Kohlhaas, Director of Research at the Society has written an article for the Association of Medical Research Charities (AMRC). Therein she comments “we continue to be incredibly excited about the potential the Register holds in transforming our understanding of MS …data science is an area that we as a country need to build capacity in… Big data will revolutionise our understanding and treatment of diseases.” You can read the full article on the AMRC website here.

The Register began as a pilot study in 2011; the first medical registry to link clinical data to self-reported outcomes, and has since grown to be one of the leading medical registries of its kind. We now have 5 members of permanent, dedicated staff, with additional support from Swansea University’s Data Science department. We have over 17,000 online participants and partner with 46 NHS sites who help us facilitate the clinical data linkage.

If you are new to either the clinical or the online part of the Register, or if even you’ve been with us a while, here’s an informative video we produced a little while ago that explains what we’re all about.

Click here to view the video

Over the course of the next 3 years our ambition is to grow the Register; more participants = more data = more research into MS. We also want the Register to be useful to everyone including the clinicians that we partner with. Our goal is to launch a clinical portal, alongside the existing participant portal, so that your MS Team can see what life with MS is like for you outside the clinic which will assist you with your appointments.

Read more

Association of British Neurologists (ABN) Annual Meeting 2019 Posters

The UK MS Register is constantly evolving in a bid to improve and expand our online platform for people with MS and our clinical partners.

One important development that the MS Register is working on right now utilises a Natural Language Processing (NLP) computer program. NLP is designed to automatically recognise the text from any scanned document and convert it into digital information, organised into a computer database. The program is called ATEMS (Automatic Text Extraction for Multiple Sclerosis).

It is hoped that such technology could significantly improve the administrative burden on our partnering NHS clinical hospitals and sites. With so many competing priorities for NHS staff we expect this program will vastly reduce the time it takes to upload MS records to the MS Register; a crucial task to enable pioneering research into the condition.

The program is still in its infancy but the concept is already producing impressive results based on a small set of 100 clinical letters. The program’s precision was compared to the accuracy of human annotations of the same letters.

This preliminary work was showcased at the Association of British Neurologist’s (ABN) Annual Meeting at the end of May 2019. More detail about this work can be seen in the abstract poster below…

The other piece of work demonstrated at the ABN event was the improvements that have been implemented into the MS Register website. Launched towards the end of last year, many of you will have already experienced the new-look website.

Since the website re-launch we’ve seen user engagement levels increase, a surge of interest in the research we’re involved in and some excellent user feedback. More about this can be seen in the abstract poster below…

The Annual Meeting of the Association of British Neurologists took place from 21 – 23 May 2019 at the EICC in Edinburgh.

ABN 2019 NLP Poster

ABN 2019 PPI Poster

Vitamin D Study – Latest Update

‘Vitamin D levels in people with MS’ study update

Our partners at Queen Mary University of London, who are conducting this study have issued the following update…

We want to thank all the participants and their friends who have so far taken part in our study ‘Vitamin D levels in people with MS. We have had a fantastic response to the study and a high return rate for completed sample kits!

Not everyone who joined the study will receive a kit – there were over 1700 of you who signed up to participate – but we are sending out more of our 500 kits this week, so you may find one coming to you over the next few days.

If you are one of the participants chosen to receive sampling kits, you will be given both an MS participant and control participant pack. As you may remember, wherever possible, we are asking the MS participants to find a friend who does not have MS to join them in the study. This will help us look for differences between the MS and the non-MS populations, and so is an important part of the study. We have included one pre-paid envelope for each sampling pack – so you can do your sampling with your friend and send the samples back together.

The more samples we get back the better the data will be, so if you have received a kit in one of our earlier mail-outs and have not yet had a chance to do you sampling, it’s not too late!

Thanks again to all the participants who have taken the time to participate in this study through the online questionnaire and to the friends who were recruited to join some of you with sampling kits. We really appreciate your help with this research!

This study is being organised by Dr Ruth Dobson at the Wolfson Institute of Preventative Medicine, Queen Mary University London. It is funded by the MS Society of Great Britain. Further information about this study can be obtained by contacting Polly Rawlinson on telephone no 0207 882 5698 or email p.rawlinson@qmul.ac.uk.

Are people living with MS in the UK vitamin D deficient?

MS Awareness Week: Generating Awareness at ‘Living Well With MS’

Over the course of the last month the MS Register team has been attending MS events organised by some of our clinical partners and funded by the MS Society.

The first of these events took place on Friday 22nd March at Parc Y Scarlets stadium in Llanelli; home of the prestigious Scarlets rugby team. The ‘Living Well With MS’ event welcomed approximately 80 people and included talks about understanding the disease, the science behind MS research, the impact of diet and exercise on MS and how to improve mental wellbeing.

Living Well With MS forms part of a wider initiative by the MS Society in a series of events designed to maintain and improve emotional wellbeing and provide practical advice to help people live well with MS.

In the second of these events, a smaller delegation was invited to the Mercure Hotel in Swansea on 12th April to take part in a similarly structured day but designed for an audience of newly diagnosed people with MS.

In a positive and supportive environment, the MS Register was able to engage directly with our partners, participants and those unaware of what we do. The events gave us the opportunity to highlight how the crucial work we’re involved can have huge potential for MS research.

The events were organised by the MS clinical team at Morriston Hospital, Swansea Bay University Health Board in conjunction with MS Society Cymru and its local branches. Consultant Neurologist at Swansea, Dr Owen Pearson, said of the event ‘it’s a wonderful opportunity to support the people with MS who attend our clinics by providing information on the different MS types, managing symptoms, treatments and latest research. It also allows us to highlight the support that’s available in the local community’.

UK MS Register Welcomes a New Analyst to the Team!

Elaine Craig

Research Analyst

Elaine will be working with the team to query the Register’s datasets for research questions, as well as ensuring the accuracy and completeness of the data, and documenting methodologies and procedures.

Prior to this, Elaine worked with infectious disease data at the University of Oxford, managing and standardising diverse datasets in Ebola and Malaria. Elaine has a BA and an MPhil from the University of Cambridge.

MS-STAT2: A Secondary Progressive MS Study

The MS-STAT2 clinical trial has been designed to test the effectiveness of repurposed simvastatin in patients with secondary progressive MS (SPMS), to determine if the rate of disability progression can be slowed over a 3 year period.

While treatments in the early stage of MS (relapsing-remitting MS, or RRMS) have become increasingly effective, there remains no current disease-modifying treatment (DMT) for SPMS. An earlier study, MS-STAT1, used magnetic resonance imaging (MRI) techniques to determine that patients taking simvastatin over a two year period resulted in a reduced rate of brain atrophy compared to those taking a placebo.  That study took place with 140 patients, whereas the MS-STAT2 trial will increase patient participation considerably to almost 1,200 in an effort to determine whether simvastatin can become a DMT for SPMS.

The MS-STAT2 trial is being coordinated by University College London, and has 24 active NHS Trusts or centres participating around England, Scotland, Wales and Northern Ireland.

To date almost 380 patients have been screened, and new centres continue to open UK-wide.

Pictured – Professor Jeremy Chataway at UCL is leading the research

For anyone between 25 and 65 (inclusive) with SPMS, we would encourage you to visit the following page to register your interest if you would like to hear more about the trial: www.ms-stat2.info .

What Your Telling Us

  • 11,143 of you have completed the questionnaire ‘My other conditions or comorbidities’.
  • 18,418 other conditions or comorbidities have been reported.
  • 3,464 have reported that they have no other conditions.

 

 

UK MS Register Newsletter – March 2019

The latest edition of the Register’s newsletter should be hitting inboxes this week.

UK MS REGISTER NEWSLETTER – MARCH 2019

 

Data

Digest

What is the UK MS Register?

The UK MS Register is a ground-breaking study designed to increase our understanding of living with MS by capturing more real world data from people with MS in the United Kingdom. This provides an extremely rich bank of data which is producing important research. Examples of this work can be found on the ‘publications’ page on website. Read more.

Is my data secure?

The Register is a secure e-research platform utilising High Performance Computing. Carefully designed Information Governance ensures person-based data with high privacy risk is managed to the highest standards, and is ISO 27001 certified. Read more.

Have your say.

We welcome any feedback, ideas, suggestions or complaints to the MS Register team using our contact form, or by emailing contact@ukmsregister.org .

Questionnaire Window Now Open!

Every 6 months we ask you to complete a series of questionnaires through our online portal. The window for completing questionnaires is now open. As well as our regular ongoing surveys we also have some guest questionnaires available for completion. These include:

My MS My Needs 3. Conducted by the MS Society aiming to gain information on the needs of people living with MS in the UK. (open until 31st May 2019).

Fatigue and Physical Function (with Merck KgAA). You will only see this if you took part in the launch 6 months ago. Keep completing these to increase your chances to win an iPad!

Read more here

What You’re Telling Us…

  • 11,143 of you have completed the questionnaire ‘My other conditions or comorbidities’.
  • 18,418 other conditions or comorbidities have been reported.
  • 3,464 have reported that they have no other conditions.

The most widely reported conditions broken down into sub-types…

Read more here

MS-STAT2: A Secondary Progressive MS Study.

The MS-STAT2 clinical trial has been designed to test the effectiveness of repurposed simvastatin in patients with secondary progressive MS (SPMS), to determine if the rate of disability progression can be slowed over a 3 year period.

Read more here

Vitamin D Study Update

Thank you so much to everyone participating in the ‘Vitamin D levels in people with MS’ study! We are so pleased at the level of interest this study has generated from all across the UK. We have had over 1700 participants enrol and complete a questionnaire.

Read more here

UK MS Register Welcomes a New Analyst to the Team!

Elaine Craig, Research Analyst

Read more here

Got a minute?…

We would like to ask you a quick question based on your experiences around MS and Childbirth. The survey is very brief and available to both women and men, however, not everyone will see it in the list of surveys. If you do, we would very much appreciate your input. Contains a maximum of only 4 questions and should take less than 5 minutes.

Events in 2019

The UK MS Register will be exhibiting at the following events in 2019…

  • Living Well With MS – Parc Y Scarlets, Llanelli, 22nd March 2019
  • MS Society Cambridge Group Meeting, 29th April, Ely Leisure Centre, Cambridgeshire
  • ABN Annual Meeting 2019, 21 – 23 May, The EICC, Edinburgh
  • MS Frontiers – University of Bath, 4-5th July 2019
  • ECTRIMS – Stockholm, 11-13th September 2019

And finally…

If you’ve been completing questionnaires on our portal recently you may have noticed that the Barthel Index survey no longer appears. Our research has shown that this survey isn’t telling us anything that our other existing surveys aren’t. This research, presented at ECTRIMS, can be seen here –

 

 

Questionnaire Window Now Open!

Every 6 months we ask you to complete a series of questionnaires through our online portal. The next window for completing questionnaires is now open. As well as our regular ongoing surveys  we also have some guest questionnaires available for completion. These include:

My MS My Needs 3

The 2019 My MS My Needs survey is now open. We need to hear from as many people as possible who are living with MS in the UK. The results will help shape work over the next few years to ensure people with MS are getting the best service and support possible.

(Open until 31st May 2019)

Fatigue and Physical Function – Merck KgAA

A study looking to better understand the burden associated with MS symptoms, including fatigue and its effects on your physical function and any issues you have with day to day activities. This is a follow-on questionnaire so only those who took part in the last survey will see this one in their survey options.

(Open until 10th March 2019)

Letters from your MS team.

The MS Register is always looking for new and innovative ways to incorporate linking your clinical information with your survey answers.

We are currently investigating linking your letters from your MS Team to your portal record. Something we hear from other MS researchers is: “how do you know all your participants have MS without a clinical record?” – Having your letters would allow us to confirm this.

If you are happy to provide this, please take a scan or photo of the most recent letter from your MS Team and upload it on your hub page.

 And finally…

We would love to hear from you. Specifically, how are you finding the feedback feature on the new portal? We think it’s great but what do you think!

 

My MS My Needs 3

Together with the MS Society we’re launching the third My MS My Needs survey – your chance to tell us what it’s like living with MS in the UK today.

My MS My Needs is one of the largest surveys of people affected by MS in the UK. It asks whether people with MS are getting the treatments, services and support that they need. And this information is invaluable for our campaigning work – highlighting where services work well, and more importantly, where improvement is needed.

Our 2019 survey is now open!

What do we do with the results?

In 2016, over 11,000 people with MS completed the survey. The results were the driving force behind a number of our campaigns.

Treat me right

We’re campaigning for the right treatment at the right time for people with MS, whatever your situation, wherever you live.

Survey results from 2013 and 2016 found that around half of all people eligible to take a disease modifying therapy (DMT) aren’t taking them. While the number is going up, we want more people who can take a DMT to have access to the treatment they deserve.

We hope the 2019 survey results will show that more people than ever can access and are taking the DMT they need.We’re working with MPs, health care professionals and people living with MS to understand what barriers there are to taking a DMT, and how we can remove them. And in 2018, we launched ‘Our treatment stories’, where people with MS talk about what factors affected their decision to take a DMT.

MS: Enough

The 2016 survey found that 12% of people were struggling or really struggling on their current income, even after receiving benefits. Our MS: Enough campaign thinks that having MS is enough. It shouldn’t be made harder by a welfare system that doesn’t make sense.

So in 2018, we launched our campaign to scrap the PIP 20 metre rule, which makes it harder for people with MS to receive the support they need to live independent lives. Over 36,000 of you signed the petition, letting the government know that enough is enough.

End the care crisis

Our 2016 survey showed, compared with the 2013 survey, higher proportions of people are now paying for care and relying on family and friends to care for them. And only 1 in 3 people are getting the support they need with essential everyday activities like washing, dressing and eating.

Following these results, we successfully campaigned for more funding for social care in England, with some additional money delivered in 2017 and 2018.

We still have a way to go to before we have a properly funded social care system that people with MS can rely on, which is why this 2019 survey is so important to help us keep fighting.

We need your support

The 2019 My MS My Needs survey is open now until Friday 31 May. We need to hear from as many people as possible who are living with MS in the UK. The results will help us shape our campaigning work over the next few years to ensure people with MS are getting the best service and support possible.

The technical bits

The survey is available online through the UK MS Register. You’ll need to create an account with the Register, and answer some basic questions about yourself, to access the My MS My Needs survey.

If you’d prefer a paper copy of the survey, you can request one by getting in touch with our Supporter Care team by email at supportercare@mssociety.org.uk, or by phone on 0300 500 8084.

The survey is also available in Welsh, large print, and easy to read. And if you would prefer to complete the survey over the phone, you can call us on 020 8438 0700.

Further reading

Update on the ‘Vitamin D levels in people with MS’ study

Thank you so much to everyone participating in the ‘Vitamin D levels in people with MS’ study! We are so pleased at the level of interest this study has generated from all across the UK. We have had over 1700 participants enrol and complete a questionnaire.

Our partners at Queen Mary University London will be sending out 500 sampling kits to those on the next phase of the study. Around a half of all kits should be with have arrived with you with the remaining half being sent out imminently.

This study is being organised by Dr Ruth Dobson at the Wolfson Institute of Preventative Medicine, Queen Mary University London. It is funded by the MS Society of Great Britain. Further information about this study can be obtained by contacting Polly Rawlinson on telephone no 0207 882 5698 or email p.rawlinson@qmul.ac.uk.

Are people living with MS in the UK vitamin D deficient?

The Importance of Patient and Public Involvement in Medical Registries.

The United Kingdom Multiple Sclerosis Register has been enjoying a recent suite of high profile endorsements, emphasising the importance of involving people with multiple sclerosis (MS) to progress medical research.

The UK-based, Association of Medical Research Charities (AMRC) lists the UK MS Register as being one of the leading UK data patient registries. The AMRC highlighted the innovative way in which the UK MS Register is being used to lower barriers to research, drive efficiency and reduce costs. The full article which features a case study on the MS Society and the UK MS Register is available here http://bit.ly/2KmhbZs .

 

Since it was launched in 2011 the UK MS Register, based at Swansea University, has been funded and championed by UK charity, the MS Society. As part of the charity’s involvement programme, the MS Society promotes a model of collaboration by engaging people with MS in the charity’s long-term organisational vision, whose goal is for everyone to live a life free from the effects of MS.

The register links MS researchers to a large community of people with MS via three mechanisms;

  1. Participants are asked to complete a series of questionnaires every six months.
  2. Participants can also consent to have their medical records securely linked to the register and their questionnaires.
  3. Other clinically collected data can be also be linked to the register. For e.g. GP system data.

This creates an incredibly rich data source. Numerous analyses, performed by the Wellcome Trust and several other large medical research charities, have demonstrated an overwhelmingly positive public attitude to contribute their information to medical registries.

Dr Susan Kohlhaas, Director of Research at the MS Society, said: “We’re driving research into better treatments and care, and the UK MS Register is an integral part of that process. Most importantly, it helps us more fully understand what it means to live with MS in the UK today. Our research priorities are set by people living with the condition, and the Register provides important insights into what they want, including how to stop disability progression.”

The MS International Federation, ‘a unique global network of MS organisations, people affected by MS, volunteers and staff from around the world’ have also commended our work. In a recent article the federation shines a spotlight on some of the largest and most impactful registries from around the world. The full article presents a case for putting people with MS at the heart of research and how registers such as the UK MS Register are instrumental in this… https://bit.ly/2ROxIwg .

To find out more about the register please follow this link to our website https://ukmsregister.org/  and check out our publications section https://ukmsregister.org/Research/Publications to the kind of research resulting from this the project.

Merry Christmas from the UK MS Register Team!

The UK MS Register team would very much like to wish you all a Merry Christmas!

We would also like to take this opportunity to introduce you to Katie Tuite-Dalton’s maternity leave cover, Chris Roberts, who will be taking on the role of Communications Officer during this time.

Prior to this role, over the course of the last 10 years, Chris has worked at Cancer Research UK and Marie Curie in community engagement type roles and before that studied Business Studies here at Swansea University.

Throughout 2018 we’ve been busy here at the UK MS Register; we’ve developed and launched a new website to make the content clearer and we’ve added the ‘My Feedback Report’ which provides you with a useful snapshot of the information you’ve uploaded. We’ve developed new working relationships leading to exciting new studies involving vitamin D and physical function levels. Plus, we have grown our partnerships with NHS hospitals and now have 45 clinical sites that are able to feed information directly into UK MS Register.

The Vitamin D study questionnaire is still open for a few more days if you haven’t already completed it. More information about the study can be found below and on the UK MS Register website.

Thank you for your involvement this year and we look forward to your participation in 2019 and wish you all a very Merry Christmas and a Happy New Year!

Are people living with MS in the UK vitamin D deficient?

We are excited to announce that our newest study is open to recruitment! For this study we are working with our colleagues at Queen Mary University London, this study will be looking at vitamin D levels in the UK MS population. We know that vitamin D is one of the top research priorities for people living with MS. We hope the results from this study will inform us about the vitamin D status amongst the population and help us understand the factors that influence it. This information can be used to help design future vitamin D randomised control trials – so it is important that we get it right!

This study is a new kind of study for the MS Register – after answering questions via the Register, the 500 people who are selected to take part will receive packs through the post from Queen Mary University London. These will contain kits to allow people with MS to send us a finger prick blood spot and cheek swab, so that we can test blood vitamin D levels. Because we are doing everything using the Register and then via post, this means that you can take part in a research study without needing to travel – it all takes place in the comfort of your own home.

We are asking that each person with MS invites a friend to join them in this study, someone who is the same sex, similar age and lives nearby. Your friend will serve in our matched control group and allow us to look at differences between the people with MS and people without MS.

What does taking part in this study actually involve?

Firstly, we have a brief questionnaire which is filled out online via the MS Register. This will look at how much vitamin D people with MS are taking, and things that might affect vitamin D level. The more responses we have to this, the better idea we will have about what is happening across the UK.

From these respondents we will select 500 people to take part in the second part of the study. These participants will be the one who receive the finger prick and cheek swab sampling kits for themselves and their nominated friend. We need to get people from all over the UK and with different types of MS, so that we can look at the whole picture.

Once these are returned to us we will use these samples to look at levels of vitamin D and the genetic factors that can influence it. We are carrying this study out over the course of a year – so please don’t worry if you don’t hear from us right away! Even if you aren’t selected as one of the 500 participants to receive a sampling kit your participation is appreciated. ALL of the information we get from participants completing the survey will be used to help us report on the current status of vitamin D in people with MS.

That’s it – there are no visits to meet our researchers. There will of course be feedback on the results of the study on the Register.

We are looking to learn as much as we can about all people living with MS across the UK. We are hoping to hear from all over- from Land’s End right the way to John o’ Groats, from the largest cities to the smallest towns.

Interested?

If you are interested in finding out more about this study please visit here to find out more information.

MS SMART: FIRST ‘3 IN 1’ MS TRIAL COMPLETED

FIRST ‘3 IN 1’ MS TRIAL COMPLETED

Researchers have completed a clinical trial on MS in which 3 different drugs were tested at the same time instead of 1 at a time – a world first in progressive neurological disease research.

Funded by a partnership between the Medical Research Council and the National Institute for Health Research and MS Society UK and National MS Society (US), the ‘MS-SMART’ trial, taking place at a number of UK sites including UCLH, tested the safety and efficacy of 3 repurposed drugs (used to treat other conditions) in 445 people with secondary progressive MS – a later stage and currently untreatable form of the condition. All three drugs had been selected based on promising effects in experimental and pilot human studies.

The 3 drugs in this study were not found to be effective – but researchers said the trial has broken new ground and established a benchmark for future trials not only for MS but also other neurodegenerative disorders such as the Dementias.

The research team and funders would like to thank all the participants and their families for their time, commitment and energy in taking part in the MS-SMART trial. The team would also like to thank all the investigators and trial centres around the UK for being part of this fantastic project and making it happen.

 

FURTHER INFORMATION
Matt Chorley – National Institute for Health Research University College London Hospitals Biomedical Research Centre:
m.chorley@ucl.ac.uk / 0207 679 5291