The Secretary of Health has met with leading academics in an attempt to speed up the process of finding a cure for motor neurone disease (MND).
Steve Barclay sat down with researchers, charities and patients for a panel discussion on Thursday that identified how scientists, government and charities can work together to find a successful treatment for the debilitating condition.
The NHS app will also be updated on Friday to make it easier for people to see and take part in MND and other health research, including studies testing new treatments through interviews and surveys.
Following the panel discussion, the Health Secretary visited the MND Care and Research Center at King’s College Hospital in Camberwell, London, which was the first such center in the country.
Charities participating in the roundtable included the Name’5 Doddie Foundation, set up by former Scottish rugby union player Doddie Weir, who disclosed his diagnosis in 2017 and died last year.
Mr Weir helped raise awareness of this recently alongside former rugby league player Rob Burrow, who has received an MBE for his work around the condition.
The disease causes most patients to slowly lose the ability to walk, dress, write, speak, swallow, and breathe, and their life expectancy is shortened.
The government says that since cutting red tape in December 2022, £29.5m of £50m was immediately injected through specialist research centers so that NHS patients could benefit from cutting-edge treatments and medicines.
Clinical trials such as that of the drug tofersen, which was developed by a team at the Sheffield Center for Biomedical Research, are said to be promising, with the drug thought to slow disease progression in some patients.
The roundtable also discussed how an additional £2 million that may be in the pipeline could be used to help understand the underlying causes of the condition so that treatments can be developed more quickly.
Dentist and former Penzance football player and coach Dean Mooney, 52, says his life has changed dramatically since he was diagnosed and has urged others with the condition to take part in the research.
He said: “There is a lot of talk in the media about a possible treatment for motor neuron disease.
“Let’s be real: It probably won’t benefit me in my lifetime, but if I can save someone else from having to go through this, I’ll do whatever it takes to help bring the investigation to a close.”
Mr Barclay said: “Motor neurone disease can have a devastating impact on people’s lives, and I am working with leading researchers to accelerate research and help find a cure as soon as we can.
“We are making sure that the funds reach the researchers as quickly as possible. I encourage people in England to register to research via the NHS app and join our ever-growing UK-wide registry, Be Part of Research.”
Professor Lucy Chappell, Chief Executive of the National Institute for Health and Care Research, said: “We need to work together to ensure high-quality research is funded so that breakthroughs can reach patients as quickly as possible.
“MND patients have shown the value to all of us of taking part in research and I am excited that we are now making it even easier for people in England to register their research interest via the NHS app and be part of the research. ”.