Scientists from the University of Sheffield have been awarded part of a new £4.25 million grant to kick start a UK-wide effort to end motor neuron disease (MND).
The 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 six universities including the University of Sheffield which is renowned for its MND research.
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.
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.”
As part of the new MND research partnership, scientists from SITraN will pool their expertise over three years to:
- coordinate research efforts 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 be part of 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 Dame Pamela Shaw, Professor of Neurology at the University of Sheffield and Director of SITraN, said: “Recent pre-clinical and clinical research means that we have a much better understanding of the mechanisms causing motor neuron injury in MND.
“This funding and coordinated research effort will allow the major MND researchers across the UK to come together and combine their skills to develop better tests and ways to measure MND progression, allowing doctors to compare different drugs.
“Of all of the neurodegenerative conditions, MND is the condition most ready for translating insights from discoveries in basic neuroscience into benefits that improve the quality of life and life expectancy of our patients. This wonderful announcement offers real hope for patients and families facing this cruel disease.”
SITraN is a unique translational research centre, which brings together world-leading scientists and clinicians to identify new ways to prevent and slow down debilitating neurodegenerative diseases like MND, Parkinson’s, Alzheimer’s and Multiple Sclerosis.
With state-of-the-art laboratories and equipment, a clinical database of over 2,000 patients and a large resource of human biosamples and brain-bank material generously donated by patients, SITraN has put Yorkshire on the map for its revolutionary neuroscience research.
Professor Janine Kirby, Professor of Neurogenetics at the University of Sheffield’s Institute for Translational Neuroscience, said: “The MND Collaborative Partnership recognises the strength of patients, researchers and charities working together. By supporting MND research groups across the country, the outcomes will be greater than each group working independently, with the overall aim of making significant advances for the benefit of patients.”
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.”
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).
The funding is awarded to researchers from King’s College London, University of Sheffield, University of Liverpool, University College London, University of Oxford and University of Edinburgh.