Published: 22 June 2022
Charities and government research organisations including the NIHR have awarded £4.25 million to MND experts at six UK universities to kick start collaborative efforts to end motor neurone 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 the NIHR, with leading researchers.
Funding has been awarded to 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 will seek 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 good 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.
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.”
Health and Social Care Secretary Sajid Javid said: “Motor neurone 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 NIHR is also launching a highlight notice focused on MND - this funding opportunity highlights the need for research in this area and encourages researchers to come forward with ideas for MND research projects, with the call open across all researcher-led NIHR funding programmes.
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), MRC (£500,000) and the NIHR (£500,000).