Participant Feedback on the MS Regsiter: 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

 

Guest Questionnaires

Oulatest collaboration is to looking at Fatigue and Physical function, working with Merck KGaA 


What? We are looking to better understand the burden associated with MS symptoms, including fatigue, including fatigue and  its effects on your physical function and any issues you have with day to day activities’

 

Why? The information you share will provide important insights on the experience of fatigue and and its effects on physical function. This, in turn will feed into the development and testing of new questionnaires that can improve how such impacts are measured in individuals with MS, internationally.

This means that you will not only be contributing to a study looking at the effects of MS on lives in the UK but also how this subject is looked into in the future.

How? Everyone on the MS Register will be given the chance to take part in this study beginning in September 2018. The study involves answering a set of questionnaires immediately, then at a few other intervals throughout the year, after one week, after 6 months and then at one year. Completing the surveys in this research requires approximately 40 minutes.

Win an iPad! As a token of appreciation to study participants, Merck are giving away four iPads. You will be automatically eligible to win one by completing this research, and your chances of winning increase with the number of assessments completed. Four draws will be made, during the research, and the winners will be notified at the end of the research next year.

Merck KGaA is a leading science and technology company in healthcare, life science and performance materials. Merck is currently developing an oral drug for treating MS, which is currently in phase II, which adds to two other drugs already available to patients.

The MS Register asks regular questionnaires so that we can start to build a picture of your MS over time. We also work with Researchers across the UK and wider and sometimes they ask us to ask you their own questionnaires. Requests to work with us are taken through a strict application and governance procedure and are only accepted if the projects are deemed to be a relevant and scientific research question.

The New Look MS Register Website

Its here.

The all new version of the MS Register website is finally ready.

Three reasons to go to www.ukmsregister and log in

  • Much more interactive: see what you have already told us, easier to update.
  • The option to see your previous responses and the option to downloaded them
  • More information on the research generated so far by people on the MS Register

And lots more…. including asking you the main questionnaires every six months instead of every three.

To log on/return for the first time;

As part of our new security measures you will be asked to choose a new password that is more complicated (at least six characters long, at least one uppercase character, one number and one special character)

You will then be asked to let us know exactly what type of communications you would like from us for example – do you want to hear about clinical trials or to receive our newsletter? Also to let us know if you want to see your feedback.

The next screen you will see is your ‘Hub’ page where you can check all of your information is correct, see any questionnaires that you have waiting and your feedback if you have opted in to see this.

Other new content includes;

Apart from being all about YOU meaning you can use the new site to not only contribute to research about MS in the UK but to also keep a log of your MS, there are a couple of brand new sections to the website:

  • Research section – Information on research generated so far which helps demonstrate the point of contributing to the Register and adding to the growing body of data.
  • NHS Hospital pages – Information about the hospitals that we are working with and how a hospital can get involved.

So please go ahead, join us or rejoin us and help Make Sense of MS

We hope that you enjoy the new site and we are always open to new ideas and comments. This new design is guided by people with MS during feedback sessions and also communication via the internet. Please get in touch if you have suggestions, comments or good ideas!

 

 

Ocrelizumab (Ocrevus) recommended by NICE for relapsing MS

Ocrelizumab (drug name Ocrevus), a new treatment for relapsing remitting MS has been recommended by NICE. Originally NICE had made a draft recommendation against the new drug, but changed their minds after feedback from a number of patients and other stakeholders.

It should be available on the NHS in England and Wales within the next 3 months for people who have Relapsing MS and are unwilling or unable to take Alemtuzumab.

See the MS Society’s article for more information 

The UK MS Register publishes a new paper!

Our latest paper looks at how people on the website report their MS compared to the supplied clinical information – the answer is very accurately! Well done everyone!

A scientific criticism of the  MS Register is how can we guarantee that our  participants  who are on website answering questionnaires, have a confirmed diagnosis of MS from a Neurologist?  While people’s answers have been used countless times for internal and guest (other Universities/researchers)research and published in many journals, there is always the question – How representative of the UK MS population is the MS Register online population?

Comparing Data

Luckily we work with over 43 NHS hospitals  across the UK who consent patients to the participate in the clinical side of the MS Register and then provide us with information about their MS.

We looked at characteristics from this population, and characteristics from the online population and analysed the results. for example, we found them to be closely matched for mean age at diagnosis (clinical = 37.39, portal = 39.28) and gender ratio (female %, portal = 73.1, clinical = 75.2). For those patients who are both consented at a hospital and also answer questionnaires online,  we were also able to look at what the clinical staff have recorded and what patients have told us on the MS Register -these matched well.

Conclusions of the Research

Self-reported information from participants on the UK MS Register looks very similar to a clinically supplied population.This means that the MS Register can be utilised as a representative group for Research.

Thank you everyone and well done!

Here is a link to the paper 

 

 

 

 

Do people with MS want to know their Prognosis?

 

In 2015 we asked our participants to answer a questionnaire about prognosis on behalf of a team of researchers at the University of Southampton.

In just under three months, over 3000 Register participants answered the questionnaire and the team of researchers have just published their findings.

Prognosis is a term used to describe a prediction of the likely or expected development of a disease. There is limited research about how people with MS feel about this subject and to try to find out more, this questionnaire asked about people’s experiences with communication about their prognosis and what their attitudes and preferences were regarding their long term prognosis.

The results

The results showed that most participants wanted to know their long-term prognosis. This varied at different stages of their MS.

Percentages of participants who wanted to know their long term prognosis, did not want to know or were unsure.

Most participants felt that long-term prognosis information would help them with decision-making, especially when thinking about the following things

Treatment options (71.2%),

Finances (77.8%)

and end-of-life care (78.3%).

Other findings

The study reports back two other interesting findings. “Around half of participants claimed to have never discussed their long term prognosis with their neurology team and around half claimed to have ‘no idea’ about their long term prognosis” (discussion section of the paper)

One of the main findings of the study was that many people with MS really do want to have more information on their long term prognosis, they claim to think about it often and it is thought of as useful thing to know about when making decisions about treatment and other life issues. Of course there is still an important minority who did not want to know and this preference should not be overlooked.

What now?

This study is of interest because Health Care professionals may consider changing the way that they communicate patient’s long term prognosis. Prototype software tools exist to deliver estimates of prognosis of an individual person with MS, based on very large real-life data sets. There is more work to be done to look at the best ways to communicate the predictions that this tool could provide, and how these predictions could affect patient’s emotional well being and decision making.

The paper is called “Do people with multiple sclerosis want to know their prognosis? A UK nationwide study.”

The authors are: Laura Dennison, Martina Brown, Sarah Kirby, Ian Galea 

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0193407

 

Exciting new changes to the Register website…. coming soon!

You might have noticed that you haven’t heard very much from us recently. This is because we are focusing all of our attention on the next version of the website – which we are very excited about!

Some of the new features will include

  • Asking you to return six monthly instead of every three months
  • The website will be easier to use – to log in, see your profile and what you have told us about you and your MS.
  • Provide more feedback on the research the project is generating that YOU have contributed to
  • Give you the option to see your previous responses to the questionnaires. This can be downloaded and taken to appointments or viewed any time on your device.
  • Give you the option to share your results with your clinician (if treated at one of our partner sites)

The star bar is going to disappear and be replaced with a different system which you can also choose to see or not. Another interesting aspect of the new version of the website will be focusing on the research the project is generating. This will help to demonstrate the point of contributing to the Register and adding to the growing body of data.

We would like to urge you to log on and make sure that your details and questionnaires are up to date before the relaunch so that when you log in everything is up to date and accurate

Thanks for your patience while we work on the new website.

The UK MS Register Team.

 

Ask the Register: Family Prevalence and MS

Thanks to our participants, the MS Register has a huge wealth of information about living with MS in the UK. This data gets analysed by researchers from both Swansea University, where we are based, and also by external researchers. They look at the data to attempt to answer important research questions such as what sort of level of access do people with progressive MS have to services in the UK or for example the role of nutrition in alleviating symptoms of MS, to highlight a couple of recent studies.

But what about you? What would you like to find out from this vast collection of data from people with MS in the UK? We asked our participants if they had any questions that we could try to answer with the data.

“I’m curious to know how many parents with MS have children who also have MS?”

On one of our questionnaires we ask: “Do you have a relation with MS and if so what is their relationship to you?”

 

 

These results are not a reflection of the likelihood of a relative
of someone with MS getting MS or not, they are results from
our population of people with MS There has been a great deal
of research around the genetics and family prevalence of MS
and the MS Society produced a great fact sheet summarising
the research in 2015.

https://www.mssociety.org.uk/ms-resources/genes-and-msfactsheet

By looking at several different studies from around the world,
the MS society reported back in more detail about family
prevalence.

  • If a parent has MS: about a 1.5% chance (1 in 67)
  • If a brother or sister has MS: about a 2.7% chance (1 in 37)

But even for the closest of relatives there’s still a much greater
chance that a person will not develop MS.