Two-week monitor after unexplained fainting identifies life-threatening heart conditions in Scottish-led study

Earlier monitoring increased detection and reduced one-year death rate ~

Fitting a wearable heart monitor for 14 days when patients go to A&E with unexplained fainting improves detection of life-threatening heart problems, according to the results of an Edinburgh-led trial funded by the British Heart Foundation and presented at the European Society of Cardiology Congress in Munich.

Using the two-week monitor, which is about the size of a car key fob, more than doubled the detection rate of heart rhythm problems in the study of 2,234 people. After one year, heart rhythm problems were identified in 22 per cent in the monitor group compared to nine per cent of those who received standard care.

The death rate after one year in the two-week monitoring group, at 1.5 per cent, was almost half that of the standard care group, at 2.9 per cent.

Heart rhythm problems, known as arrhythmias, were identified in an average of 22 days in those with chest-worn monitors, compared to 54.5 days with standard care. This included life-threatening arrhythmias like complete heart block, ventricular tachycardia, and a pause in the heartbeat of over six seconds. 

As a result of increased and quicker detection, more people who used the chest-worn monitor started treatment for their arrhythmia. The findings are also published today in the New England Journal of Medicine.

Professor Matthew Reed, Professor of Emergency Medicine at the University of Edinburgh, who led the study, said: “We were able to begin patient monitoring within 72 hours of people arriving at A&E, much faster than the current standard. 

“Continuous data on a patient’s heart rhythm for two weeks is invaluable to cardiologists when they are trying to diagnose an arrhythmia. As the results show, more patients with hidden heart rhythm problems were identified, and their treatment could be sped up.

“We believe that the lower death rate seen for this group is strong evidence that this new strategy can save lives. Hopefully it will be adopted by hospitals across the country, so that fewer people with a potentially life-threatening condition slip through the net.”

The researchers estimate that around 650,000 people visit A&E with unexplained fainting each year in the UK. 

Regular unexplained fainting can seriously impact patients’ lives, preventing them from doing day-to-day tasks like driving. Although in many cases the cause is harmless, fainting episodes can be a sign of abnormal heart rhythms, some of which can be dangerous. 

Arrhythmias in these patients are hard to diagnose. People who have fainted have usually recovered by the time they reach A&E, meaning their heart rhythm has likely returned to normal, and tests performed in A&E won’t show any abnormalities.

Currently, patients with unexplained fainting are referred for tests such as a Holter monitor – a small wearable device that records the heart’s rhythm – to try and identify arrhythmias.  But a Holter monitor is usually only worn for 48 hours, so can only identify an arrhythmia in this small time window. 

Patients must also attend an outpatient cardiology clinic first, meaning that monitoring is done at any point from six weeks to two years after they attend A&E.  

The new heart monitor is smaller and is worn in the middle of the chest. It can be worn continuously for the two-week period. In the trial, half of the study volunteers who attended one of 45 UK A&E departments with unexplained fainting were fitted with the new monitor. The other half received the current standard monitoring.

Data from the monitors were sent to clinicians after the two-week monitoring period, who then determined whether their recordings showed signs of an arrhythmia and if treatment was needed. If the monitor had picked up a serious arrythmia, the patient’s clinician was alerted within 24 working hours. 

There was no difference in the average number of fainting episodes reported after one year – 1.37 in the monitor group compared to 1.58 in the standard care group. 

However, improved detection of arrhythmias meant two-week monitoring improved the number of people receiving treatment. For the monitoring group, 10.8 percent were given anti-arrhythmic medication, and 6.8 per cent had a pacemaker implanted, versus 7.3 per cent and 4.6 per cent respectively for the standard care group.

The researchers hope that now the new strategy has been shown to help doctors treat more dangerous heart problems, and reduce death rates, it will become standard practice in the NHS.

Professor Bryan Williams, Chief Scientific and Medical Officer at the British Heart Foundation, which funded the trial, said: “This large trial is a good example of how BHF investment in research can drive life changing innovations in healthcare.

“The study shows that monitoring the heart with simple new technology after a patient has had a sudden collapse can identify potentially life-threatening disturbances in heart rhythm that can be treated to reduce risk of death. 

“The results of this trial should certainly help inform future clinical practice when treating patients with sudden unexplained collapse in the future.”

STEPHEN’s STORY

Stephen, from West Lothian, joined the trial after fainting whilst exercising on a cross trainer.

The 68-year-old had been diagnosed with atrial fibrillation, a common arrythmia that affects the top chambers of the heart and can raise a person’s risk of having a stroke, when he was 49. However, he had never fainted until he did so twice within a week in August 2023.

“The first time came on all of a sudden” he said. “I was sitting in a chair in the front room, and I started fading in and out. I lost consciousness for a few seconds, and I had no idea what had happened. It was so out of the blue that I thought I should go to the doctor.”

Stephen’s doctor sent him to hospital, where he was kept in for the day whilst clinicians did standard checks. These did not flag any issues, so he was sent home and told to return if the symptom happened again.

“The next day, I was on the cross trainer, and I just passed out” he said. “This time, I was in hospital for three days. They kept an eye on me, and they thought it might be exercise related. I was given a stress test on a treadmill, which went alright.”

It was at this point that a nurse asked Stephen if he’d like to join the trial.

“I didn’t need any extra time to think it over. I thought it was a great opportunity to help others who might be in a similar situation. It’s always important to get involved in things like this” he said. 

“The device is very user friendly; it goes in the middle of your chest and it’s small enough that it doesn’t get in the way at all. You can wear it whatever you’re doing, even in the shower, and you hardly notice it.”

He wore the monitoring device for 14 days but didn’t experience any episodes of fainting during that time. However, the data from Stephen’s device showed that his atrial fibrillation was not being controlled by his medication. 

The condition was causing his heart to beat at 227 beats per minute at certain points, a dangerously high number.

The clinicians caring for Stephen raised his dosage of bisoprolol, a medication that can help control heart rate.

“They advised me on all the different treatment options, and I decided to stay on the medication rather than have a cardiac procedure and see how I go. I’m very glad I took part in the trial and that this was picked up. I haven’t fainted since, it looks like the treatment has been working, so I’m really happy” he said. 

“The doctor signed me off and I don’t need regular check-ups, but the door is always open to go back if I need to. Touch wood it won’t happen again, but if it does, I’m definitely in a better place to deal with it now.”

DEVICE IMAGES: ©2026 Boston Scientific Corporation or its affiliates. All rights reserved.

Funding boost for ground-breaking cancer and Parkinson’s research team

Researchers at the University of Dundee to receive a government funding boost to continue their vital work for a further 5 years

  • Vital work by Dundee-based cell biology researchers, who have already developed a drug to treat skin cancer and attracted £60 million in private investment, to continue thanks to further government backing
  • Almost £30 million in government funding could potentially unlock new treatments for conditions, from motor neurone disease to Crohn’s, by supporting research into how signals are transmitted within the body’s cells. 
  • Science and Technology Secretary will announce funding at the Universities UK conference as he sets out his vision for harnessing the power of higher education to boost innovation and economic growth across the country.

Dundee-based researchers with a track record of devising treatments for deadly diseases like cancer and Parkinson’s – whose work has crowded in £60 million in investment to date – are receiving further backing from the government to continue their vital work for a further 5 years, Science and Technology Secretary Peter Kyle will announce today (Thursday 5 September). 

The Medical Research Council’s Protein Phosphorylation and Ubiquitylation Unit (MRC PPU) will receive nearly £30 million of funding allocated from UKRI’s Medical Research Council (MRC) to bolster its cell biology research centre as it continues its vital work over the next 5 years. 

Currently, the 200-strong scientific community of staff and students based at the University of Dundee are using cutting-edge technology and biochemistry to explore how signals transmitted within the body’s cells are disrupted.

Working closely with industry, Dundee’s unit has been a fundamental part of the development and clinical approval of over 40 drugs that are now widely used to treat patients, attracting almost £60 million in private investment.

It is just one example cementing Scotland’s place at the forefront of the UK government’s plans to make Britain a powerhouse for life sciences that attracts international investment and drives forward the deployment of discoveries that grow the economy, create prosperity across the country and improve lives and public services.

Improving our understanding of the processes within cells could be the key to unlocking the scientific basis of innovative treatments for a range of diseases – from Alzheimer’s and Parkinson’s to Crohn’s and coeliac disease.  Their work has already delivered a drug that is now widely used to treat skin cancer.

The new funding comes ahead of the Science and Technology Secretary addressing higher education representatives at the Universities UK conference at the University of Reading, where he will reflect on his personal experience in higher education and will give his full-throated backing to the sector as a vehicle for much-needed economic growth.  

He will also outline his vision for DSIT, and the crucial role universities can play in this, harnessing discoveries and innovations for novel therapies and technologies, like those developed in Dundee, that could transform patients’ lives and drive economic growth.

Science and Technology Secretary Peter Kyle said: “I went to university later in life than most, but when I did it changed everything for me. It was the first time in my life that people saw potential in me that I never knew I had, and gave me the support and focus I needed to build something from it.

“The value of our universities, to the economy and to the whole of society, cannot be overstated. 

“As we embark on a decade of national renewal, the higher education sector has a profound role to play in every piece of work we’ll need to do, to build a Britain that delivers for working people: from seizing the potential of clean energy to rebuilding the NHS. I will always champion our universities.

“They are society’s most powerful engines for innovation, aspiration, economic growth and the creation of better lives for all – which is why investing in their work, like this £30m in funding, is so important.” 

Science Minister Lord Vallance said: “The work at the University of Dundee, which we are announcing support for today, is proof of how deep expertise, effective links with industry, and the power of curiosity can deliver meaningful improvements to people’s lives, while also driving economic growth across the UK.

“This funding puts the unit on track to strive for still more health breakthroughs, that could help more patients live longer and healthier lives.” 

Working with other companies, including GlaxoSmithKline, the team was central to developing a drug now widely used to treat melanoma, and a promising new drug for Parkinson’s disease is in clinical trials as a result of the team’s globally recognise work, investigating the condition to discover potential causes and treatments. 

Universities are vital to the government’s mission to boost our economy and transform healthcare services with world-class science and research. They are at the heart of our research strengths, underpinning key sectors including life sciences.

Backing university-based researchers, like the team at the University of Dundee, will ensure that they can continue unlocking the technologies and therapies that could be life-changing to patients, and which drive economic growth and productivity. 

Professor Dario Alessi, Director of the MRC PPU said: “We are incredibly grateful for the long-term support that our Unit has received from the MRC over the last 34 years.

“This has enabled our researchers to tackle the most important questions and greatly contributed to our understanding of how derailment of biological pathways causes human diseases including neurodegeneration, diabetes, cancer, and immune dysfunction.  

“Our mission for the next 5 years will be to work with leading research centres, clinicians, and pharmaceutical companies to translate our discoveries into clinical progress and accelerate drug discovery.

“Whilst doing this research we aim to provide our staff with a unique training opportunity working in a collaborative multidisciplinary environment paying attention to improving culture and development best practices.” 

Professor Patrick Chinnery, Executive Chair of the Medical Research Council, said:  “The MRC are proud to be investing for a further 5 years in the exceptional research of the MRC PPU in Dundee.

They are leaders in conducting rigorous fundamental research and then working with industry to translate those breakthroughs for patient benefit. The MRC PPU have an outstanding culture of collaboration and sharing their leading research expertise, products and techniques with the wider scientific community.” 

MND Scotland launches network to connect people with MND and researchers

MND Scotland has launched a network of events to bring together researchers and people with, and affected by, motor neuron disease (MND) to help drive research through shared knowledge, ideas and lived experience. 

Following a series of successful pilot events in 2023, the Lived Experience and Researcher Network (LEARN) aims to connect MND researchers and people with MND. In the pilot, seven people supported by MND Scotland were invited to take tours of researcher’s labs, allowing researchers and people with MND to connect, while also giving researchers the opportunity to directly hear the opinions of people affected by MND on research. 

This year, LEARN will invite people affected by MND to meet with researchers in Aberdeen, Dundee, Edinburgh and Glasgow during September and October, and culminate with a whole day event in March 2025.

Dr Jane Haley, Director of Research at MND Scotland, said: “We know that people with MND are eager to learn more about research happening here in Scotland. MND Scotland’s dual role, delivering support and funding research, means we can provide opportunities for people to learn about research directly from the researchers themselves.

“Building relationships between people with lived experience and researchers introduces real world perspective which helps ensure that research reflects the needs of people with, or affected by, MND.

A better understanding of the condition and the needs of people affected by MND will also help researchers better communicate their work in a manner, and using language, that is accessible to everyone, no matter what their level of scientific knowledge.

Dr Christopher Henstridge, a Principle Investigator who runs his own lab in Dundee, participated in the LEARN pilot. He said: “As a lab-based research team, we rarely get the opportunity to hear directly from people affected by MND about their experiences of the very condition we are trying to understand and treat.

“Last year, we hosted three people in Tayside affected by MND for an afternoon of lab tours and research discussions. For us, this was a great opportunity to practise talking about our work in a language that can be easily understood.

However, talking about our research is what we do every day, so the most impactful conversations were the personal stories so honestly and openly shared by people with lived experience.

“The strength and courage they show every day is inspirational and we really appreciated the interest and insight they showed in our research. I hope that the experience gave everyone that came along insight into the scientific process and instilled real hope that there are a lot of researchers like us pushing hard to find effective treatments and a cure.

“When I come into work and discuss the research projects with lab members, I no longer think of “MND”, I think of the individuals affected by it and this emotional connection really drives me to ensure we are doing rigorous and impactful research.

“I believe these interactions are extremely important and I’m delighted to hear that MND Scotland plans to expand the LEARN scheme and develop new ways of bringing even greater numbers of researchers and people with lived experience together.”

LEARN is a three-stage initiative that will conclude with an event in Edinburgh in March 2025, hosted in partnership with fellow MND charity, My Name’5 Doddie Foundation:

Stage 1

MND Scotland will host drop-in sessions in Glasgow, Edinburgh, Dundee and Aberdeen between September and October 2024. These sessions aim to form relationships between people with lived experience of MND and researchers.

The drop-in sessions will be held at the following locations – 

Aberdeen Science Centre, Aberdeen – Monday 9 September 2024

Bonnie and Wild, St James’ Quarter, Edinburgh – Thursday 26 September 2024

MND Scotland Office, Glasgow – Thursday 3 October 2024

Dundee Science Centre, Dundee – Thursday 24 October 2024

Stage 2

Stage 2 will involve laboratory tours, much like the pilot, allowing people affected by MND to get a first-hand view of MND research. This will give people a behind-the-scenes look at how MND research is carried out and provide an opportunity for those affected by MND to share their thoughts on research and how to make MND research more accessible.

Stage 3

LEARN will conclude, in March 2025, with a day-long event at Dynamic Earth, Edinburgh, where My Name’5 Doddie Foundation will be joining MND Scotland to work in partnership to deliver the event.

The day will offer information for researchers and training opportunities for ECRs, along with sessions involving people with lived experience of MND.

The collaboration between MND Scotland and My Name’5 Doddie Foundation reflects the shared commitment between MND charities to push for a world without MND.

More information about the events will be available on our website, via our newsletters and social media channels. www.mndscotland.org.uk

To provide more details on the events and the aims of LEARN, the MND Scotland research team will host a webinar at 12.30 pm on Friday, 26 July 2024.

To sign up for the webinar, please complete this form:

https://forms.office.com/e/ewyTKeCHBs

Empowering the future of medical research

MEDICAL RESEARCH SCOTLAND ENGAGES ALMOST 1,400 PUPILS FROM 47 SCHOOLS THROUGH INSPIRING VIRTUAL LEARNING EVENTS

Medical Research Scotland, Scotland’s largest independent medical research charity, has ignited young people’s passion for science, education and careers with the return of its Medical Research Scotland Academy, linking secondary school pupils with industry experts.

For 2024, the Medical Research Scotland Academy reached 1,400 pupils from 47 secondary schools spanning from Aberdeen, across the Central Belt to the Scottish Borders. This free to access program successfully engaged S4, S5 and S6 pupils with a keen interest in STEM subjects. The innovative academy was delivered virtually allowing sessions to be utilised within the usual teaching schedules.

Throughout the online academy, pupils from schools across Scotland participated eagerly in live-streamed interactive lessons every Friday morning for the month of March. These sessions – directly broadcasted to science classrooms – allowed students to learn from the comfort of their familiar learning environments.

Led by scientists, industry leaders, and PhD students, whose research is funded by Medical Research Scotland, students were treated to a series of inspiring and insightful presentations.

This year, the academy introduced “Live from the Lab”, a new route which allowed pupils to look inside loa PhD researcher’s working environment and the interesting research they too could be conducting post-secondary school.

Kilgraston School in Perth is one of the many schools that have seen the benefits of these online sessions.

Through the weekly series, pupils had the unique opportunity to delve into topics including: How medical research can change the world, The power of data in research, Making medicines and The future in medical research. 

These sessions were presented by esteemed scientists from leading Scottish universities including the Universities of Aberdeen, St Andrews, Edinburgh and Strathclyde as well as organisations including Generation Scotland and Edinburgh Clinical Research Facility.

Gerry Young, Director of Science at Kilgraston School, said: “It has been great to see the return of the Medical Research Scotland Academy for 2024.

“The online webinars have had a huge impact on our pupils that have shown a keen interested in STEM related subjects and a medical path post-secondary school.

“Throughout this virtual academy, our students have gained a priceless understanding of medical research by interacting with top experts in the field, enhancing their understanding of scientific principles.

“Experiencing real-world medical research has sparked a passion for science in our students. We appreciate this invaluable opportunity, which has empowered them to pursue careers in the medical research field.”

Professor Heather Wallace, Chair of Medical Research Scotland, said: “As Chair of Medical Research Scotland, I’m proud of Scotland’s legacy in producing top-tier research scientists helping to drive global health breakthroughs.

“The 2024 Medical Research Scotland Academy continues our mission, fostering connections between aspiring medical professionals and esteemed academics. Witnessing the enthusiasm among students from schools across the country reaffirms the academy’s value.”

Medical Research Scotland is dedicated to advancing health in Scotland and beyond through the support of cutting-edge research aimed at enhancing the diagnosis, treatment, and prevention of diseases.

To join us in our mission, please visit our website at:

medicalresearchscotland.org.uk and explore ways to contribute.

If you would like to view this year’s Medical Research Scotland academy webinars, please visit our YouTube channel here.

Researchers develop 3D printed bandage that delivers innovative treatment for diabetic foot ulcers

Researchers from Queen’s University Belfast have designed a new 3D printed bandage, known as a scaffold, which presents an innovative method of treatment to heal diabetic foot ulcers (DFUs).  

The research is the first of its kind and is a breakthrough for diabetes management. The findings have been published in the journal Biomaterials Advances. 

The new discovery combines lipid nanoparticles and hydrogels, which are used to create personalised skin-like 3D printed scaffolds. These scaffolds have the ability to release both a bulk and sustained release of antibiotic loaded molecules to treat diabetic ulcers.  

This combination has been shown to greatly improve patient outcomes and has the added benefit of being a more sustainable, efficient and cost-effective method of treatment as these scaffolds in the future can be “easily” produced within the hospital setting.  

This approach will also cut time for medical professionals and improve patient care, as the wound dressing can be monitored and provide the treatment needed without the need to be taken on and off repeatedly in order for the medical professionals to check the healing process.  

The research team was led by Professor Dimitrios Lamprou from the School of Pharmacy at Queen’s University Belfast, in collaboration with Ms Costanza Fratini (Erasmus Visitor), Mr Edward Weaver (PhD Student from the School of Pharmacy at Queen’s), Dr Sofia Moroni (PhD Student between Queen’s University and the University of Urbino Carlo Bo), Ms Robyn Irwin (PhD Student from the School of Pharmacy at Queen’s), Dr Yahya Dallal Bashi (Postdoctoral Researcher from the School of Pharmacy at Queen’s), Dr Shahid Uddin (Industrial Collaborator), Professor Luca Casettari (University of Urbino Carlo Bo), and Dr Matthew Wylie from the School of Pharmacy at Queen’s. 

Diabetes is a lifelong condition that causes a person’s blood sugar level to become too high. It is among the top ten causes of deaths worldwide. DFUs are a serious complication of diabetes, affecting approximately 25% of diabetic patients. When identified, over 50% are already infected and over 70% of cases result in lower limb amputation. 

As a strategy to manage DFUs, skin alternatives and wound dressings are successful treatments as they keep the wound environment “under control”, whilst providing bioactive compounds that help to manage infection and inflammation and promote tissue repair.

This is a complex process that requires several combined therapeutic approaches. As a result, there is a significant clinical and economic burden associated in treating DFU. Furthermore, these treatments are often unsuccessful, commonly resulting in lower-limb amputation.  

The use of drug-loaded scaffolds to treat DFUs has previously been shown to be successful by the same team. To create this new scaffold, the research team used a 3D bioprinting technique that combines, in one single filament, two different bioinks.

The inner core of the filament is a nanocomposite hydrogel that contains lipid nanoparticles encapsulated with thyme oil. The outer shell of the filament is represented by a hybrid hydrogel and enriched with free thyme oil. Thyme oil and other essential oils, have a promising future as an all-natural antibiotic replacement, helping address the issue of increasing incidences of antimicrobial resistance.  

This combination provides two different release ratios of the drug molecule; a bulk release for the first 24 hours and a sustained release for up to 10 days. This enables an initial disease prevention post-administration, which may be the highest-risk time, followed by sustained infection prevention during the following days of antimicrobial efficacy. 

Commenting on the importance of this study, Professor Dimitrios Lamprou, lead on the project and Chair of Biofabrication and Advanced Manufacturing from the School of Pharmacy at Queen’s University Belfast, said: “This innovative, personalised, and sustainable approach, provides the healing needed for the diabetic foot ulcers, to avoid any complications, and enables doctors to monitor the healing constantly.

“This avoids needing to remove dressing constantly, which can provoke infection and delay the healing process. Medical professionals also do not need to change the drug dosage as this double release, supports that need.” 

Dr Matthew Wylie, Lecturer from the School of Pharmacy at Queen’s University Belfast and responsible for the in vitro antibacterial activity evaluation of these novel bandages, said: “Diabetic foot ulcers are chronic wounds highly susceptible to infection which can lead to limb- or life-threatening complications.

“Our natural liposomal antibacterial approach has shown promising initial antibacterial results highlighting the potential of this strategy to prevent bacterial colonisation during the crucial early stages of wound healing, as well as longer term protection of the wound.

“Improved wound management will not only enhance patient quality of life but could reduce the need for traditional antibiotic therapy, a key aim in the fight against antimicrobial resistance development.” 

New £4.25 million grant kick starts UK-wide collaborative research effort to end motor neuron disease

£1 million for MY NAME5 DODDIE Foundation

·        £4.25 million research grant has been awarded that seeks that seeks to discover meaningful MND treatments within years, not decades  

·        Grant awarded by charities LifeArc, MND Association, My Name’5 Doddie Foundation and MND Scotland, together with government research organisations Medical Research Council (MRC) and National Institute for Health and Care Research (NIHR)

·        Funding awarded to researchers from King’s College London, University of Sheffield, University of Liverpool, University College London, University of Oxford and University of Edinburgh to establish a new UK-wide motor neuron disease (MND) research partnership to address problems hindering progress

·        Funding is a springboard for the MND community to develop plans for further ambitious and large-scale research projects, attract significant investment for MND, and encourage more centres to join the scientific mission to find treatments and ultimately a cure for MND

·        Generosity and fundraising efforts of charity supporters have played a big part in making this partnership a reality.

Global MND Awareness Day: A group of charities and government research organisations has awarded £4.25 million to MND experts at six UK universities to kick start collaborative efforts to end motor neuron disease (MND).

This new ‘MND Collaborative Partnership’ brings together people living with MND, charities LifeArc, MND Association, MND Scotland and My Name’5 Doddie Foundation, government bodies Medical Research Council (MRC) and National Institute for Health and Care Research (NIHR), with researchers from King’s College London, University of Sheffield, University of Liverpool, University College London, University of Oxford and University of Edinburgh.

The partnership team will work together to find solutions to address problems currently hindering MND research and seeks to discover meaningful treatments within years, not decades.

Members of this new UK-wide MND research partnership will work together and pool their expertise over three years to:

  • coordinate research effort and deliver maximum impact for people with MND
  • develop better tests to measure MND progression and that allow doctors to compare different drugs
  • improve MND registers so doctors can collect detailed, high-quality data about the disease, and understand which patients are most likely to respond to a particular drug and therefore recommend them for the trials most likely to benefit them
  • support people to take part in clinical trials more easily
  • develop more robust lab tests and models of disease to enable scientists to test theories about the disease and a pipeline of potential therapeutic agents that could ultimately be used as MND treatments.

They will also launch a major new study involving 1,000 people with MND from across the UK to better understand disease progression and how people respond to new and existing treatments.

MND (also known as amyotrophic lateral sclerosis, or ALS) is a devastating neurodegenerative disease affecting the brain and spinal cord. People progressively lose nearly all voluntary movement and need complex care, and around half of those diagnosed die within two years.

Six people are diagnosed with MND every day in the UK and the condition affects around 330,000 across the world. One person in every 300 will develop MND. The only licensed drug for MND in the UK has a modest effect on extending life – but no treatments are available that can substantially modify disease or cure the condition.

Professor Ammar Al-Chalabi, co-director of the research programme and Professor of Neurology and Complex Disease Genetics at King’s College London and Director of King’s MND Care and Research Centre said: “Our goal is to discover meaningful MND treatments within years, not decades. This landmark funding will bring the UK’s major MND research centres together for the first time in a coordinated national effort to find a cure.

“We now have a much better understanding of MND, so we must take this opportunity to accelerate development of new treatments and work together to move this knowledge into the clinic and help people affected by this devastating disease.”

Dr Catriona Crombie of LifeArc, the charity which has coordinated efforts from all funders to deliver this landmark MND Collaborative Partnership, said: “Over recent years, scientists have made great progress in MND, and this has opened up several promising avenues that could ultimately make a difference to patients.

“But there are some barriers hindering progress. For the first time, the MND community – that’s patients, funders, scientists and doctors – have come together to work out the problems and plan a way forward. As funders we are really excited at what this exceptional group of people could achieve for those affected with MND.”

David Setters, who is living with MND and has been involved in shaping the partnership said: “We welcome this collaboration, which paves the way for the £50 million government investment promised in November 2021, focused on making the first meaningful treatments for MND available within years, instead of decades. 

“It brings real hope to those of us living with MND to see our leading neuroscientists and charities coming together in this way. The prospect of easier access to clinical trials and the most promising therapies being fast-tracked gives us a much-needed boost and brings a real sense of purpose to the community.”

Professor Christopher McDermott, one of the co-directors of the research programme and Professor of Translational Neurology at the Sheffield Institute for Translational Neuroscience (SITraN) said: “We believe that by combining and coordinating our expertise, we will be more effective than if we work on projects in isolation.

“This partnership will provide the infrastructure to attract additional MND funding and enable further MND centres and researchers to join forces in the national effort to find effective treatments for MND. The partnership is the first step towards our goal to establish a national MND institute.”

Health and Social Care Secretary Sajid Javid said: “Motor neuron disease has a devastating impact on those who are diagnosed, their families and loved ones – but there is hope. 

“This new partnership is a highly ambitious approach which will drive progress in MND research and, backed by £1 million of government funding, will bring the MND research community together to work on speeding up the development of new treatments.The collaboration across government, charities, researchers, industry and people with MND and their families will take us one step closer to one day achieving a world free from MND.”

The Partnership was formed in 2021 to coordinate and pool funding for research into MND to speed up progress and help research to move towards the clinic and ultimately reach patients faster.

Funding for the MND Collaborative Partnership research grant totals £4.25 million and contributions are as follows: LifeArc (£1 million), MND Association (£1 million), My Name’5 Doddie Foundation (£1 million), MND Scotland (£250,000), Medical Research Council (MRC) (£500,000) and National Institute for Health and Care Research (NIHR) (£500,000).