Red tape will be cut to speed up research into motor neurone disease (MND) across the UK, enabling faster progress towards treatments.
- £29.5 million of government funding to be invested immediately through specialist research centres and partnerships with leading researchers
- A further £20.5 million to accelerate work on the most promising treatments has also been committed for use in MND research, available through open call processes
The government will cut red tape in order to speed up research into motor neurone disease (MND) across the UK, with immediate investment so NHS patients can benefit from cutting-edge treatment and medicines, Health and Social Care Secretary Steve Barclay and Business Secretary Grant Shapps have announced today.
Work being done in the field of MND research has highlighted the impact that cutting-edge research can have, but also the progress still to be made to help sufferers of this debilitating condition.
Removing red tape will ensure funding reaches frontline researchers more quickly, enabling faster progress towards treatments. This will be done through Biomedical Research Centres – which are collaborations between academics and clinicians to translate breakthroughs in the lab into potential new treatments, diagnostics and medical technologies – to get funding to the most promising researchers who are already working in MND.
As well as this, the National Institute for Health and Care Research (NIHR) and Medical Research Council (MRC) will work together to ensure proposals are referred to the most appropriate scheme for consideration at the early idea stage.
This presents an opportunity for outstanding researchers to get further funding beyond the initial £50 million to get new treatments from the lab to patients.
The Health and Social Care Secretary will also host leading researchers and patient groups at a roundtable to discuss their research on MND, and how they can access this additional funding and ensure bids are made – this will ensure an open dialogue of communication.
Health and Social Care Secretary Steve Barclay said:
Motor neurone disease can have a devastating impact on people’s lives, and I’m determined to help accelerate research to find a cure and develop innovative treatments.
We’ve already invested millions to improve treatments and our understanding of this condition, but there’s more we can do, and that’s why I’m now slashing red tape to fast-track funding and ensure it reaches frontline researchers more quickly.
I’m grateful to the United to End MND campaign for their work raising awareness and I warmly congratulate Kevin Sinfield on his epic achievement completing 7 ultra-marathons, as well as remembering the late Doddie Weir for his outstanding contribution over the past 5 years.
Secretary of State for Business, Energy and Industrial Strategy Grant Shapps said:
Some of the UK’s brightest and best scientific minds are battling to find treatments – and one day, a cure – for the cruel and devastating condition that is motor neurone disease. We have invested millions of pounds in supporting them in that fight, but we are committed to doing more.
Today’s measures will cut unnecessary red tape, getting that vital funding to the front line faster, as well as investing more in the crucial work that our world-leading scientists and researchers are doing.
Last year, £50 million was committed to MND research over the next 5 years by the Department of Health and Social Care and the Department for Business, Energy and Industrial Strategy, reinforcing progress being made by the UK’s world-leading scientists. Recent successes include stem cell research by the Francis Crick Institute to investigate the molecular processes that cause the disease, and the development by the UK Dementia Research Institute (DRI) of a new form of testing for MND, which is now being used in a clinical trial to assess the effectiveness of a new treatment.
Today (12 December 2022), the government is accelerating £29.5 million of the committed funding into specialist research centres and partnerships with leading researchers to reduce bureaucracy and help researchers access funding as quickly as possible.
The £29.5 million package includes:
- £8 million for early phase clinical research for MND, speeding up innovative new treatments for patients through the NIHR Biomedical Research Centres (specialist research centres that bring together experts to translate scientific breakthroughs into potential treatments for patients)
- £12.5 million to support the best discovery science at the UK DRI, recognising the fact that the underlying mechanisms of MND are shared with frontal temporal lobe dementia, presenting new possibilities for targeted drug development
- a £3 million translational accelerator investment from MRC (to be matched later by another £3 million from NIHR) to join up these investments with other relevant programmes such as the MND collaborative and the UK Dementias Platform
- £1 million of government funding, which was allocated in June 2022, to enhance co-ordination of UK MND research by setting up a MND Collaborative Partnership, bringing together people living with MND, charities and MND researchers across the UK to discover meaningful MND treatments. This is co-funded by the medical research charity LifeArc and MND patient charities MND Association, My Name’5 Doddie Foundation and MND Scotland
- £2 million additional investment in this MND Collaborative Partnership to focus on gathering and analysing existing data on the condition to explore the underlying causes of MND and help develop breakthrough new treatments
The remainder of the committed £50 million MND funding is available for researchers to access via NIHR and MRC. To support this work, the government has today published a joint NIHR and MRC highlight notice inviting outstanding researchers across the academic and life science sector to submit applications to an open call for the highest-quality projects, responding to progress in science so breakthroughs can reach patients as quickly as possible.
NIHR and MRC are particularly looking for the opportunity to see ‘pull-through’ of treatments with early promise into clinical trials, as they emerge from the initial funding in this space. The NIHR and MRC already fund programmes across the whole translational research pipeline and anticipate funding scientifically excellent applications that will have a positive impact on patients’ lives, with the anticipation that this will increase the funded applications further in coming years over and above the initial commitment.
The funding will support researchers to:
- better understand the disease and its related conditions
- develop and test treatments
- eventually give people living with the condition the chance of a better quality of life, and more good years with their loved ones
CEO of the NIHR Professor Lucy Chappell said:
Today’s significant commitment to delivering motor neurone disease research is a hugely welcome next step towards really tackling this debilitating illness.
This detailed plan makes full use of our world-leading health research sector, and gives us the best chance of making truly impactful findings and treatments.
Health research saves lives. We look forward to working with our researchers, partners and people living with motor neurone disease to ensure the work outlined today is the best it can be.
The government will continue to harness expertise and innovation, such as the work that is already underway at NIHR Sheffield Biomedical Research Centre where scientists are trialling new treatments to treat the condition. Promising trials have recently shown a delayed progression of the disease when the new drugs were given to patients.
The funding builds on the Life Sciences Vision published in 2021, and sets out the government’s commitment to speed up innovative neurodegeneration and dementia research, so that new treatments reach patients faster.
Dr Catriona Crombie of LifeArc, on behalf of the MND Collaborative Partnership, said:
The UK is leading the way in MND research. This new £2 million funding awarded to the MND Collaborative Partnership will help us to unlock the potential in patient data, and could reveal new clues for scientists and researchers to develop new treatments.
We are grateful the government has listened to the coalition of people living with MND, the MND scientific community and MND charities who have highlighted how vital and urgent MND research progress is. We look forward to continuing to work together to ensure the funding plans outlined today have the biggest impact and drive new treatments towards people with MND, fast.
This boost to MND research is part of wider funding into neurodegeneration research, including funding to support pioneering clinical trials that have led to major advances in how the disease is understood. This includes improving our understanding of how different types of MND are passed on genetically, which could unlock new treatment options for patients using gene therapy.
Background information
MND is a condition that affects the brain and nerves, and 5,000 people in the UK are thought to have the condition. There is currently only one drug licensed in the UK to treat MND – Riluzole – which slows the progression of the disease and extends someone’s life by a few months.
In 2021, at least £50 million in funding was committed to MND research over the following 5 years by the Department of Health and Social Care and the Department for Business, Energy and Industrial Strategy, as part of a package of £375 million for research into neurodegenerative diseases.
