First patient takes part in new MND clinical trial at UHNM thanks to £100k charity funding
Patients suffering from motor neurone disease (MND) are being offered the chance take part in a brand-new clinical trial at University Hospitals of North Midlands NHS Trust (UHNM).
The North Midlands MND Care & Research Network at UHNM has become only the third centre in the UK to offer current MND patients the chance to take part in the ‘MAGNET’ trial.
The trial is designed to speed up the search for treatment that can stop, slow or reverse progression of the disease, and has been made possible at UHNM thanks to an extra £100,000 worth of funding from the MND Association.
Dr Tom Lambert, Consultant Neurologist at UHNM said: “We were absolutely delighted to receive such substantial funding from the MND Association, made possible thanks to the fundraising efforts of the late Rob Burrow and Kevin Sinfield, and awarded to UHNM in recognition of the work we are doing for our MND patients. This grant has enabled UHNM to recruit a dedicated Lead Research Practitioner for MND clinical trials over a three-year period.
“MAGNET represents the first stage of a platform trial developed by the TRICALS research network, made up of 48 top research centres in 16 countries across Europe of which we’re proud to be a part of. A platform trial means there’s an overarching protocol, and we can add different treatments and drugs into that protocol if we feel there is a potential benefit to MND patients.
“Its very important that if patients want to be involved in research with this condition, we’re able to give them that opportunity, otherwise it’s a devastating neurological condition with little hope.”
MND is a terminal illness which stops the signal from the brain reaching the muscles. Average life expectancy is just 18 months from diagnosis and there is currently no effective cure or treatment.
Debbie Whitehouse, 57, from Stafford, was the first patient at UHNM to take part in the trial after being diagnosed with MND in 2022.
Debbie said: “I’ve been a hairdresser all my life, and one day noticed I couldn’t hold the hairdryer properly- it was like it weighed a tonne. After speaking about this to a colleague, she then noticed I had a twitching, and that’s when it all started.
“I’d researched drug trials for MND, because I knew there wasn’t a cure. On the day of diagnosis, I asked to Dr Lambert to sign me up for drug trials, just so I could help and give myself a little bit of hope.
“Dr Lambert and the team have been brilliant from day one. They are helpful, sympathetic, positive, and inspirational.”
The mum of three has also taken to social media to share her story in the hope of inspiring others with the disease.
Debbie said: “By going on clinical trials and learning new information, I feel I am then able to pass that onto others in the hope it makes them feel a little bit better. I speak to others online about new drug trials, so will be sharing my experiences and information on MAGNET. My motto is, I don’t live with MND, MND lives with me.”
The MAGNET trial has also received support from UHNM Charity, who provided funding for UHNM to purchase its own spirometer, a device used to assess breathing capacity.
Fran Tatton, an MND Clinical Nurse Specialist of 13 years at UHNM, has now additionally taken up the new MND Lead Research Practitioner role thanks to MND Association funding.
Fran said: “I’m very proud to start my new role and be involved in these trials. It’s an absolute privilege to be involved with a really special group of patients. After over 20 years, there is still currently only one licenced drug used to slow down the MND process, so these trials are so important to the MND community and us.
Dr Lambert added: “I’m excited and pleased at the launch of this trial, but it’s still early steps in finding a cure for MND.”