Newcastle Hospitals teams up with leading charity to find treatment for motor neurone disease

The Newcastle upon Tyne Hospitals NHS Foundation Trust has received funding from a leading charity to explore whether certain types of medications already used to treat other conditions could slow progression of motor neurone disease (MND).

The trust has received £250,000 from the My Name’5 Doddie Foundation, set up by retired international rugby player, Doddie Weir OBE, who was diagnosed with MND in 2017.

There are approximately 5,000 people living with MND in the UK, a disease which affects the brain and motor nerves, and causes weakness that gets worse over time. Sadly, there is currently no cure and the disease eventually leads to death.

The funding will be used to support the set-up and running of the MND-SMART clinical trial. Unlike typical clinical trials which test a single treatment at a time, MND-SMART will test multiple drugs and so aims to speed up the time it takes to find effective medicines that can slow the progression of MND.

A research co-ordinator post has also been created to oversee the day-to-day running of the trial, supported by funding from the charity.

Currently, there is only one drug licensed in the UK which slows disease progression and improves life expectancy for patients with MND by an average of two to three months. The average life expectancy for people diagnosed with MND is three years from when they first notice symptoms.

Dr Timothy Williams, Consultant Neurologist at Newcastle Hospitals and Director of the Newcastle Motor Neurone Disease Care and Research Centre, said:

“Motor neurone disease is hugely challenging for patients and their families. Although researchers have discovered much more about the disease in recent years, unfortunately there is currently no truly effective treatment or cure.

“This clinical trial will compare one of two trial drugs against a dummy drug and look for slowing of changes in patient’s respiratory (lung) function, quality of life and psychological factors, such as behaviour. We will also look to see if there is improved life expectancy.

“We are incredibly grateful to the My Name’5 Doddie Foundation for this funding and hope the trial leads to improved treatments and quality of life for patients with MND, while research continues to one day find a cure for the disease.”

Sean McGrath, Medical Strategy Lead at the My Name'5 Doddie Foundation, said:

"Funding promising research is our number one priority, and we are excited to be supporting this important clinical trial that gives people living with MND much-needed opportunities and hope. We couldn't do it without our amazing supporters, and are very grateful for all they continue to do in our shared drive to find meaningful treatments for MND."

Professor Siddharthan Chandran, Director of the Euan MacDonald Centre for Motor Neuron Disease Research at the University of Edinburgh and Chief Investigator of MND-SMART, added:

“We are delighted that MND-SMART will be recruiting patients in Newcastle, and are extremely grateful to the My Name’5 Doddie Foundation for their pivotal support.”

MND-SMART has been developed by people with MND and clinical trial experts from across the UK. The study is led by the Euan MacDonald Centre for MND Research at the University of Edinburgh.

MND-SMART is an NIHR-supported study that is funded by MND Scotland, Euan MacDonald Centre and the My Name’5 Doddie Foundation.

Visit the MND-SMART website for more information about the trial.