MS Study Results

One of the things that happens too often in research is that the results and outcomes are not shared as widely as they could be. At the NIHR and in the MS Network we are determined to improve that.

Below we will share outputs from the MS research that has taken place in the region. This won't always be academic papers and journals but could be video clips or posters from the teams involved. Look below and see if there is anything of interest.

If you participated in an MS study within the South West and are interested in the results but can’t find the study listed below, then do contact us. We will be happy to contact the study team and see what information we can share.

If you have some research outputs you would like to share then please get in touch using the MS Network email address.

Balance Right in Multiple Sclerosis (BRiMS)

People with secondary progressive multiple sclerosis (SPMS) often have problems with walking and balance, which lead them to fall. Undertaking exercise and learning about falls prevention could help reduce injury risk and improve mobility.

We developed a mobility, balance and falls programme called Balance Right in MS (BRiMS). Before testing its effectiveness in a large-scale trial, we needed to conduct a small-scale version of the trial.

We asked people with SPMS who had balance and mobility problems to be assigned by chance to undertake the BRiMS programme plus their usual care, or to continue with usual care only.

Questionnaires were used to ask people about their mobility, falls and quality of life, and we measure their balance and activity levels. We interviewed participants about BRiMS and being in the trial, and collected information about costs.

Fifty-six people entered the trial from three areas of the south-west and from Ayrshire. At completion of the study we were able to review 44 people. The key measures were completed by 98% of those we assessed, but only around half (62%) of the diaries detailing falls were returned. As this was a feasibility trial, the numbers were too small for us to look at differences between the groups.

Participants liked the BRiMS programme; some did a lot of exercise and learning activities, but most did not manage the amount we asked them to do. People reported feeling a little overwhelmed by the educational content of BRiMS, and that this should be reduced in future. They told us that they felt that their balance had improved and that they fell less frequently after the BRiMS programme.

Our assessment of the trial methods we used showed that it would be possible to conduct a full-scale trial using this design, but that we need to adapt the BRiMS programme further to make it more user-friendly.

SUMS: Standing up in multiple Sclerosis (Study to assess the effectiveness of a home-based self-management standing frame programme in people with progressive MS)

What did we do?

We recruited 140 people with progressive MS, aged 34-80.
Seventy lived in the South West of England and 70 in East Anglia.
Half of the people in each region (selected at random) were provided with a home based self-management standing frame programme, which included advice and support.
People in the standing group were asked to stand in the frame for at least 30 minutes three times each week. Those in the control group continued with their usual care.
We used assessments and questionnaires to measure motor control, balance, bladder and bowel control and quality of life at the beginning of the study, after 20 weeks and at the end (36 weeks).
Twenty people (12 people with MS and eight standing assistants) completed an audio diary during the study to record their experiences of using the frame.

What did we find?

People in the standing frame group significantly improved their motor function compared to the control group.
People varied in their response to standing, but overall those that stood for longer gained more benefit.
Two thirds of people used the frame for the entire nine months of the study and asked to keep it at the end of the study to continue standing.
People who stood in the frame for longer (average 72 minutes per week) showed more improvement in motor control.
The standing frame programme was cost effective, meeting the National Institute for Health and Care Excellence (NICE) criteria for recommending treatments for funding on the NHS.

Audio diaries

We gained valuable insights into people’s experiences of using the standing frame in their everyday life. Key highlights were the:

1) enjoyment people gained from standing

(2) wide-ranging physical, psychological and social benefits gained

(3) issues people faced in undertaking the standing frame programme

(4) value people placed on having guidance and support from therapists developing a programme that suited them

How have we shared these results?

(1) Feedback days - South West & East Anglia

(2) Report to the National Institute for Health Research (NIHR) who funded this study

(3) Present results at scientific conferences

(4) Research paper publications

(5) Report to Commissioners & Policy Makers

This information is freely available on our website www.plymouth.ac.uk/research/SUMS

“posture’s improved, upper body movement has improved and I’m in a very good frame of mind.” James, EDSS 6.5

The two publications which comprehensively describe our key findings can be read via these links:

Assessment of a home-based standing frame programme in people with progressive multiple sclerosis (SUMS): a pragmatic, multi-centre, randomised, controlled trial and cost-effectiveness analysis (thelancet.com)

Freeman J, Hendrie W, Jarrett L, Hawton A, Barton A, Dennett R, et al. Assessment of a home-based standing frame programme in people with progressive multiple sclerosis (SUMS): a pragmatic, multi-centre, randomised, controlled trial and cost-effectiveness analysis. Lancet Neurol. 2019;18(8):736-47

“I’m in a very good frame of mind”: a qualitative exploration of the experience of standing frame use in people with progressive multiple sclerosis | BMJ Open

Dennett R, Hendrie W, Jarrett L, Creanor S, Barton A, Hawton A, Freeman JA. “I’m in a very good frame of mind”: a qualitative exploration of the experience of standing frame use in people with progressive multiple sclerosis. BMJ Open. 2020;10(10):e037680.

Sources of Support

Local physiotherapy services
Access to Support via

- MS Society www.mssociety.org.uk

- MS Trust www.mstrust.org.uk

- Shift MS (Forum) http://shift.ms

Thank you to all those who participated in this study.

This study was funded by the NIHR RfPB programme.

The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

CogEX: Improving cognition in people with progressive multiple sclerosis

What was the purpose of the study?

Many people with progressive MS experience cognitive difficulties, such as trouble with memory, focus, or processing information. Until now, it was not clear whether these cognitive problems could improve with therapy in people with progressive MS.

CogEx explored whether combining computer-based cognitive rehabilitation with aerobic exercise on a recumbent stepper could improve thinking and memory more effectively than either approach on its own—or compared to non-active “sham” treatments used for comparison.

What did the study involve?

Over 300 people with progressive MS from six countries participated.
Participants were randomly assigned to one of four groups:

Cognitive rehabilitation + aerobic exercise
Cognitive rehabilitation + sham exercise
Aerobic exercise + sham cognitive rehabilitation
Sham exercise + sham cognitive rehabilitation

Everyone attended 24 in-person sessions over 12 weeks.
The main goal was to see whether participants improved on a test of thinking speed called the Symbol Digit Modalities Test (SDMT).

What did we find?

Nearly two-thirds of participants improved their cognitive scores by at least 4 points on the SDMT. This is considered a meaningful improvement in daily life.
This level of improvement was seen across all groups, including the sham groups.
The combined therapy (exercise + cognitive training) did not show added benefit over the other groups.
One possible reason: even the sham exercise (stretching and balance) turned out to help physical function, which may have boosted thinking ability indirectly.
Many participants reported that being part of the study—increased movement, mental engagement, and social interaction—offered a level of stimulation they hadn’t experienced in years.

Why is this important?

The CogEx study is the largest and most rigorous trial ever conducted on cognitive treatment in progressive MS. Here’s what it revealed:

People with progressive MS can improve their thinking abilities. This was not known before and is a major advance.
Cognitive and physical training are feasible and well tolerated, even in people with more advanced disease.
Cognitive decline may not be permanent—and with the right tools, some aspects may improve.
An “enriched lifestyle” that includes physical activity, mental engagement, and social interaction may play an important role in supporting brain health.
Future treatments may need to be more personalized—such as offering less vigorous but still targeted aerobic exercise suitable for people with MS, and cognitive rehabilitation that is adapted to each person’s unique cognitive profile based on their assessment results—rather than using a one-size-fits-all approach.

What’s next?

Future research will focus on building a profile of individuals who are most likely to benefit from these interventions and on determining the ideal timing to maximize cognitive improvements.

Changing the Game: Evaluating the Real-World Impact and Cost-Effectiveness of Fampridine in Multiple Sclerosis (MS)

Fampridine use in MS

Fampridine is a medication that can help relieve the symptoms of MS in some people. It is not a disease modifying therapy. It works by enabling nerve signals to pass down the nerves more normally. Approximately 50% of people with MS respond to fampridine and this response is noticeable within 2-4 weeks. Fampridine has been shown to improve walking speed for some adults with MS and is approved for use by NHS Wales and NHS Scotland in adults with MS. It hasn’t been approved by NHS England. Plymouth’s MS service recommends people consider the fampridine free 1-month trial if they can afford the costs of private prescriptions in the longer term. This cost is approximately £2,500 per year. Plymouth collaborated with an MS centre in Wales (Swansea Bay University Health Board) to explore the benefits of fampridine for people about to commence fampridine and for people already taking fampridine. The aim of the study was to explore the personal impact on people with MS who start or who are already taking fampridine and to assess the suitability of measures presently used when evaluating its’ value for money.

How we explored the impact of fampridine

Forty five people with MS participated who were already taking fampridine. They completed questionnaires and were interviewed. Fifty four people with MS who hadn’t yet commenced fampridine participated. They all completed questionnaires before they started and after their trial of fampridine. Some participants were interviewed before they started and all who responded to fampridine were interviewed after their trial of fampridine.

What we found

We found that people with MS who responded to fampridine (PwMS responders) gained widespread benefit in their MS symptoms beyond walking. When we looked at 18 common MS symptoms, three quarters of PwMS responders benefited in 5 symptom areas, nearly two thirds benefited in 6 symptom areas and a third benefited in 10 symptom areas. We also showed that the cost effectiveness questionnaires used in early fampridine research studies may have underestimated the cost effectiveness of fampridine.

What next?

Information gathered here will help inform future studies that evaluate medication like fampridine. This study supports the wider benefits of fampridine in MS beyond walking, supporting that NHS England should follow Wales and Scotland’s decision to approve fampridine use for MS in England.

MSSTAT2: Investigating the effectiveness of simvastatin in secondary progressive multiple sclerosis (spms), in slowing the progression of disability

What was MSSTAT2 Trial?

MSSTAT2 trial, which was led by Professor Jeremy Chataway and his team, was designed to see if simvastatin (commonly used to lower cholesterol), could have an effect on reducing the rate of disability progression in SPMS.

What were the results of the MSSTAT2 Trial?

Unfortunately, the results did not show an effect in slowing progression in SPMS however, what it has done is to have now answered this question definitively.

What does this mean for people with Multiple Sclerosis (MS)?

This trial has provided a true result that simvastatin does not have a place in the management of SPMS

What is next for Progressive MS (PMS) research?

Researchers will continue to develop and trial treatment for PMS

An example of this is the Octopus trial, which is currently ongoing with approximately 300 participants taking part. It is trialling some very promising medications to see if they have an effect on PMS.

Message from the researchers

The team would like to send their gratitude to everyone who took part in the MSSTAT2 Trial.

How to get involved in future research

To find out more about how you can get involved in vital research, please contact the South West Peninsula Research MS Network via the email found at the bottom of this page.

A feasibility randomised controlled trial of peer

coaching for adults with long term conditions:

PEER CONNECT

What did the research involve?

28 people living with a long-term health condition across Torbay and South Devon NHS Trust helped us with this research.
21 people trained to become a volunteer peer health and wellbeing coach with the Health Connect Team. There were 8 online training sessions and ‘homework’ tasks.
5 people (peers) were “matched” and received coaching from one of these trained coaches (another 2 were in our ‘control’ group and were offered coaching after the study had finished).
14 online coaching sessions were offered over 6 months (weekly at first, then fortnightly and monthly).
We used questionnaires to measure peer health and wellbeing at the beginning of the study and again at the end.
11 coaches were asked about their experience of the training, and the 5 who delivered coaching were also asked about that.
All 5 peers who received coaching were asked what they thought about it.
Staff involved in referring people to the coaching and those delivering the Health Connect Coaching service were also asked about their experiences.

What did we ﬁnd?

Coaches

We were able to recruit coaches and even had more people interested in being involved than we could accommodate in the study!
People reported that the research process was acceptable.
They also explained that the process of becoming a volunteer with the Trust was lengthy which impacted on waiting to start training.
Coaches who were part of our early training groups helped us reﬁne the training- thank you!
Most coaches found the training interesting and helpful however some people experienced technical diﬃculties using the online software.
Coaches reported a good awareness of some of the key concepts of the training (‘person-centred’ coaching using a problem-solving approach).
They also told us they would only want to coach one person at a time, at least while they were new to the role.
Some coaches reported that they would value more support to keep on track with the coaching schedule and paperwork.
Two people felt the role was too much to expect of a volunteer.

Peers

We used a variety of ways to tell people about the study and invite them to join in, but we only managed to recruit 7 rather than the 60 we were aiming for.
Those that received the coaching explained the importance of being matched with someone they connected with (so did coaches).
They described how coaching helped them gain conﬁdence using health services. Health and wellbeing scores improved.
Oﬀering ﬂexibility in terms of timing and frequency of sessions was important in supporting people to take part.
Some peers felt a ‘coaching schedule’ would have helped them keep track of when sessions were.
Most people found the research process acceptable however one person described the disappointment in ﬁnding out that receiving the coaching would be delayed when they had pinned their hope on it.

Staff

Staff reported challenges being involved in the research as they were so busy managing the impact of COVID-19 on their clinical services.
Some clinicians felt they did not know enough about the Health Connect Coaching (HCC) service so did not feel confident referring their patients to it.
Suggestion was made to have an HCC champion from each service to help this.
From a service perspective, receiving sufficient referrals to facilitate matching and having the time required to support the administrative aspects of the service were some of the main challenges.
The process of developing the coach training with coaches help went well.
Those who had received and delivered the coaching expressed benefits.

How will we share these results?

Providing feedback to those who made it happen- YOU- thank you!
Report to the Torbay Medical Research Fund
Presentation of our findings at scientific meetings and conferences
Research paper publications
We will be clear when we share our findings that having so few peers involved in the research was a big limitation.
Our on-going work is looking to improve how we help support people to be part of research.

Our results paper can be accessed here:

https://bmjopen.bmj.com/content/14/8/e087020

Thank you to everyone who participated in this study.

Validation of Smartphone-based Assessments in Multiple Sclerosis

What is the GaitLab study?

Regular measurement of Multiple Sclerosis (MS) symptoms at home can give valuable insights into how the disease is progressing. This information can help clinicians make better treatment decisions, and also be useful in clinical studies to develop and test new treatments for people with MS. This study focused on testing how well smartphone-based assessments could measure walking and balance in people with MS. This is an important step toward creating reliable technology that can track symptoms accurately outside of a clinic setting.

What did we do?

● We recruited 100 people with MS (30 with progressive MS, 70 with relapsing-recurrent MS), aged 26-77, and 35 healthy people, aged 28-75.

● Participants were asked to come twice to the Brain Research and Imaging Centre at the University of Plymouth. They had a neurological examination and were shown how to use smartphone-based tests to track their MS symptoms. They performed these smartphone tests, along with standard clinical tests of walking and balance. Movement and balance tasks were measured by specialist facilities giving ‘gold-standard’ levels of accuracy.

● Participants were also asked to use the smartphone app to track their MS symptoms at home. They did this by completing a variety of short tests on the app, which included walking and balance tests. They also carried the phone with them during their daily activities. The study team then analysed the data collected from the app.

What did we find?

● The collected data allowed us to demonstrate that walking and balance characteristics measured via the smartphone closely match the robust scientific measurements recorded in the laboratory. This supported the accuracy and reliability of these new ways of collecting and analysing data about walking and balance.

● Comparing the information collected during the in-person visits with the results from the at-home tests, showed that smartphone-based tests provide repeatable results, both onsite and in the home setting.

● We also compared information collected when the smartphone was worn in different locations on the body. Results showed that people can wear the smartphone where they prefer without greatly affecting the information collected.

● Comparing the smartphone tests with the results from neurological examinations and the standard clinical tests showed that the smartphone tests measure similar things and are thus suitable for tracking the effects of MS.

● The data and results have allowed the study team to improve the set of rules used to analyse the information collected. This means they can be even more accurate, precise, repeatable, and reliable.

How have we shared these results?

Some first results were presented at the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) 2024 conference. ECTRIMS is the largest international conference focused on MS care and research, attended by over 9,000 people, and was based in Copenhagen in 2024:

Napiórkowski, N., Angelini, L., Stanev, D. et al. Smartphone-based assessment of gait with Floodlight in multiple sclerosis shows high operational robustness and analytical validity against a reference tool. Multiple Sclerosis Journal. 2024;30(3_suppl):599. doi:10.1177/13524585241269219

Festanti, A., Stanev, D., Angelini, L. et al. Smartphone-based assessment of gait with Floodlight shows association with clinical measures of disability and gait impairment in multiple sclerosis. Multiple Sclerosis Journal. 2024;30(3_suppl):602-603. doi:10.1177/13524585241269219

More results are currently being prepared to be published in scientific journals and the South West MS Research micro-site (https://sites.google.com/nihr.ac.uk/swp-ms-network/home).

The protocol was published here:

Rinderknecht, M.D., Zanon, M., Boonstra, T.A., et al. An observational study to assess validity and reliability of smartphone sensor-based gait and balance assessments in multiple sclerosis: Floodlight GaitLab protocol. Digital Health. 2023 Oct;9:20552076231205284. doi: 10.1177/20552076231205284

Thank you to all those who participated in this study.

This study was funded by F. Hoffmann-La Roche AG.

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