UK MS Register
June 2015 | Issue 7
What’s inside?
Page
1 In this edition...
2 The UK MS Register map
3 Results
5 Collaborations
8 Events
9 Contact
In this edition...
Focussing on collaboration, we are continuing to
expand our partnerships with new hospitals and
are starting to become a core part of MS
research infrastructure in the UK.
Rod Middleton
Project Manager
Congratulations - you are a very responsive group! When
we host a new questionnaire on the Register website your
answers flood in (thank you!). This is enabling researchers
to get high response rates in shorter periods of time than
they might if using more traditional methods, such as postal
surveys. Additionally, because you live all over the country,
your answers provide a more representative response than a
study was confined to one locality. All of your answers add
detail and richness to our understanding of what it is like to
live with MS in the UK.
Have you logged on and updated your details recently?
Go to ukmsregister.org to answer the latest questionnaires!
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The UK MS Register Map
The UK MS Register is growing fast! We are now collaborating with more hospitals across the
country. If you are treated by any of the hospitals below then you could have your medical
records linked to your questionnaires, providing researchers with the most comprehensive
data possible. If you would like more information, please get in touch using the contact
details below.
Map showing partner
site locations and
Register portal
participant locations
Our site locations:
•
Royal Victoria Hospital in Belfast
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Queen’s Medical Centre in Nottingham
•
Morriston Hospital in Swansea
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Queen Square, University College Hospital London
•
Shrewsbury and Telford NHS Trust
•
Basildon and Thurrock University Hospital
•
John Radcliffe Hospital, Oxford
•
Southampton General
•
Poole Hospital NHS Foundation Trust
•
The Royal London Hospital, Whitechapel
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Partner site location
Register portal participant location
As you can see from the map, Register website participants are located across the UK. If
you think you can help spread the word about the UK MS Register, to your friends or local
support groups, then please get in touch and we will send you a pack with some leaflets and
other goodies to help you.
Email: [email protected]
Tel: 01792 606 354
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Your Achievements
How many stars do you have when you log onto your dashboard on the UK MS Register?
Each star is a completed questionnaire and there are a few of you with over 800 stars!!
We would like to say thank you to everyone, but we would like to say an extra thank you to those of
you who have 800 or more stars, so we will be posting out a small reward for being such dedicated
participants.
Results:
Cladribine opinion poll
In October last year we hosted a short
opinion poll on behalf of Dr Klaus Schmierer
from Queen Mary University of London &
Barts Health, which aimed to find out the
views of participants with relapsing remitting
MS (pwRMS) on a trial comparing a first
treatment option or “induction” disease
modifying treatments (iDMT). Treatment
with iDMT is attractive as it combines high
effectiveness with short treatment intervals.
(Lemtrada) – is associated with significant
risks requiring long-term safety monitoring
for side effects. The proposed trial would
compare Alemtuzumab with a potential iDMT
drug that is not (yet) licenced for MS, called
Cladribine. The aim of the trial would be to
find out whether Cladribine works as well
as Alemtuzumab while having a lower risk
of adverse effects, as suggested by previous
trials.
Evidence suggests that treating pwRMS
early with an iDMT can slow the progression
of MS for pwRMS. However, the only
currently licensed iDMT – Alemtuzumab
Dr Schmierer, proposed the two following
questions to Register participants with
Relapsing MS.
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1)
There has been a recent increase in
the number of available disease modifying
drugs for relapsing MS. Do we still need
to conduct trials that would further
expand the range of treatment options for
relapsing MS?
2)
Would you consider taking part in a
trial to find out whether Cladribine works
as well as Alemtuzumab and has a lower
risk of adverse effects?
Yes Yes No
No
Results
In the space of two weeks, 822 people completed the questionnaire and here is what they
said:
Continue to conduct trials:
Consider taking part:
97% Yes
51% Yes
The results of this poll underline the importance of further drug trials for pwRMS, and were
reassuring in that a great deal of people would be willing to consider participation in a trial
comparing two iDMTs although information provided to the people that answered the
questionnaire was very limited at this stage.
The results were included in a funding application to the National Institute for Health
Research (NIHR) and will be valuable for further steps in exploring cladribine as an alternative
iDMT for pwRMS. Dr Schmierer said “We are very grateful for this amount of feedback in
such a short space of time”.
If you would like to find out more about Dr Schmierer’s group and their further plans you can
contact him via email: [email protected]
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Collaboration
Prognosis
You may be one of the 3000 or more people
who have answered the questionnaire on
prognosis that we hosted in collaboration
with University of Southampton for three
months from February.
Prognosis is a term used to describe
a prediction of the likely or expected
development of a disease. People who
understand their condition in more detail
could have more control over their care
and are better equipped to make informed
choices about their treatment. This
questionnaire attempted to understand how
PwMS dealt with the uncertainty of their
prognosis and to try to gather how existing
channels of information and support could
be improved.
First of all thanks, the team at Southampton
is very impressed! This high number of
responses in such a short space of time
demonstrates the utility of the Register as
a research platform. Attempting to carry
out this type of research study using more
traditional means such as through MS clinics,
MS groups or even via post, would struggle to
get this number of responses in this space of
time.
So to all of our participants who have
answered – thank you! We will let you know
the results in the next newsletter.
What is a name?
Do you have a specific term that you prefer
to be referred by when reading articles about
people who have with MS? Do you think a
particular term is not snappy enough or is
another term insensitive?
Whilst we appreciate that people do not
like to be labelled, it is necessary when
academics, clinicians or journalists report
ideas or results in social media, publications
and articles.
Professor David Baker
Barts and The London School of
Medicine and Dentistry
Professor David Baker from Barts and the
London School of Medicine and Dentistry
wanted to find out what UK MS Register
participants would prefer to be referred as,
in both formal (scientific publications and
grants), and informal settings (online, in
social media etc.)
The team at Barts plan to publish a scientific
paper on the results and we will report back
in the next newsletter and our blog as soon
as the results are analysed.
The team at Barts and the London
Neuroimmunology Group have an online
blog which reports on the latest research in
MS:
http://multiple-sclerosis-research.blogspot.com
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Progressive MS and Physiotherapy
The UK MS Register has teamed up with
researchers from The University of Glasgow
to investigate what people with progressive
forms of MS think about physiotherapy and
other rehabilitation services.
Evan Campbell
University of Glasgow
In particular, the questionnaire will seek to
find out the proportion of people on the
UK MS register with a progressive form of
MS who use physiotherapy services, their
opinion of physiotherapy and how they
would like physiotherapy to be delivered. It
will also explore how physiotherapy services
vary across the UK and what other types of
rehabilitation services are used. The team
at The University of Glasgow are keen to
find out if there are any links between the
level of disability, quality of life and how
worthwhile people think physiotherapy is
for them. The questionnaire is focussing on
people with progressive forms of MS because
rehabilitation for this sub-group has been
highlighted as an area that requires more
research. Indeed, with the formation of the
Progressive MS Alliance, there has been
an increased focus within the international
MS Research community on treatments,
therapies and symptom management for
progressive MS.
(www.progressivemsalliance.org).
Evan Campbell, a Physiotherapist and
the study’s Chief Investigator said,
“Physiotherapy is often used by people with
progressive MS. As physiotherapists, we
often think that we know what people think
of physiotherapy from our experiences
with patients; however this may not be the
whole picture. This questionnaire will not
only give us an insight into how access and
use of physiotherapy services vary across
the UK but how people with progressive
MS would like their physiotherapy to be
delivered and what their honest opinion is
of physiotherapy. In addition, we will also
be able to see how many people across the
UK are able to access other MS specialist
services and complimentary therapies. The
results of this study may highlight gaps in
physiotherapy services and influence future
guidelines for rehabilitation services”.
This questionnaire is due to be released in
July 2015 and will be available to anyone
on the Register who has indicated through
their responses that they have Primary or
Secondary Progressive MS.
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Ground-breaking Clinical trial for Secondary
Progressive MS is recruiting now
MS SMART is a two-year trial that will test the safety and effectiveness of three
different drugs against a ‘dummy’ (placebo) treatment. These drugs are currently used
for other conditions, but have the potential to protect nerves from damage which
could ultimately stop or slow disability progression.
The trial is looking at the following drugs, and will include 440 people with SPMS.
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Amiloride (licensed to treat heart disease)
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Fluoxetine (licensed for treatment of depression)
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Riluzole (licensed to treat Motor Neuron Disease)
The following main criteria will be used:
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Between 25-65 years old
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Have worsening secondary progressive MS (NOT primary progressive)
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EDSS 4.0 (maximum walk=500m) -6.5 (minimum walk=20 m with bilateral assistance) inclusive
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Not on disease-modifying drugs
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Not on Selective serotonin reuptake inhibitor already such fluoxetine [prozac] or citalopram
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Able to undertake MRI
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Be able to travel to the nearest centre
Up to 15 trial sites in cities and towns across Scotland and England are involved,
and participants will be monitored for two years using MRI scans and other clinical
measures to test for signs of MS progression.
If you would like more information about the trial, or to see if you are eligible, please
visit the MS-SMART website: www.ms-smart.org
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Events
MS Research day
Katie and Rod from UK MS Register Team
attended UCL Partners 6th Research day on
Saturday 21st March in London.
The event was set up so that people affected
by MS were not only able to listen to
presentations about existing and emerging
therapies in MS and several other research
topics, but where they also had chances to
talk to the researchers themselves face to
face. After each presentation, a different
researcher joined each table in the main hall
and attendees had 15 minutes in which to
ask them questions. It was a great way for
people with MS to engage with researchers.
Cake break
The Register Team held their annual Cake
Break sale as part of World MS Day on the
27th May in Swansea University. The sale
of the cakes which were made by the team,
their families and colleagues in the College of
Medicine, made £249 – the most raised in the
three years the team have held the event.
The UK MS Register Team in
London for MS Research day
Feedback
It is very important to us to hear what
you think of the Register. If you have any
comments or suggestions about the website,
then please get in touch with us using the
contact details overleaf.
We try to feedback results that we think you
may find interesting, but if there is anything
specific that you would like to see us
reporting on, let us know.
Upcoming events
Frontiers
We are attending the MS Society’s 2015 MS
Frontiers conference about the latest MS
Research on 29th June where we have two
presentations and an academic poster on
display. This event is a key opportunity for
researchers, neurologists, clinicians and
allied health professionals to present their
latest work, share ideas and discuss key
challenges.
Don’t Forget!
Remember to log onto the UK MS
Register every three months to
update your details!
www.ukmsregister.org
Let’s make sense of MS
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Any Questions?
Haveyougotaquestion,problemorcomplaint?Doyouwantto
talkabouttheRegisterwithoneoftheteam?Feelfreetogetin
touch.
01792 606354
[email protected]
facebook.com/UKMSRegister
twitter.com/UKMSRegister
UK MS Register
InstituteofLifeScience2,
CollegeofMedicine,
Swansea
University
SwanseaSchool,
Medical
University,
Swansea, SA2 8PP
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