ÃÛÌÒAPP

ÃÛÌÒAPP has welcomed the Motor Neurone Disease Association’s first fully funded research nurse into a ground-breaking project.

The Association’s ambitious £7.2 million Research Nurse Network will give more people diagnosed with motor neurone disease (MND) the opportunity to take part in vital research across England, Wales and Northern Ireland.

Research nurses provide information about research to people with MND, identify trials they are eligible for, explain what is involved, and provide ongoing support if they choose to take part.

Supporting patients with MND

The role, based in the MND Care Centre at the Royal Victoria Infirmary, will integrate with the existing multi-disciplinary team which currently supports more than 170 people living with MND in the local area.

Experienced research nurse Andy Hamilton is the first to be recruited to the Network and is part of the ÃÛÌÒAPP Care Centre team based at The Royal Victoria Infirmary.

Andy said: “I feel privileged that my role is the first in the country to receive funding from the MND Association. The funding will help ÃÛÌÒAPP to continue to provide the latest clinical trials and potential treatments for this devastating disease, something I feel passionate about.

“I look forward to working collaboratively with research nurse colleagues across the country as they commence their roles and to share best practice.”

“A great support”

Former truck driver Dougie Walsh was diagnosed with MND in 2023. Dougie has taken part in MND research, including the MND-SMART trial, thanks to Andy’s support.

Dougie said: “Andy has been a great support to me – he is always there to answer my questions and helps me feel relaxed while taking part in the trials. I don’t think I’d have been able to do it without his help and support.

“I’m part of the Tyne and Wear branch and still takes the wind out of you when your fellow branch members die from this disease. If the research I’m involved with can give anyone with MND a chance in the future, I’d do it.”

In time, MND Association Research Nurses will be embedded into the 24 MND care centres and networks across England, Wales and Northern Ireland.

Recruitment for research nurses at several other sites is already ongoing, with more on the way as part of the nationwide rollout.

Significant investment

Tanya Curry, chief executive at the MND Association, said: “Our community has told us just how challenging it can be to get the information they need about taking part in clinical trials.

“It’s a complex process, and one which can rob them of precious time with their loved ones. This has to change. We want to give everyone living with motor neurone disease the choice to take part in and influence the future of MND research.

“Our MND Research Nurse Network will do just that, providing the support, expertise and knowledge needed to create equitable access to trials for all.

“It’s a big investment – £7.2 million over four years – but one that will make a huge difference to people with MND and revolutionise how trials are accessed across England, Wales and Northern Ireland.”

Dr Tim Williams, consultant neurologist at ÃÛÌÒAPP Hospitals, added:

“We are delighted to receive and accept this funding from the Motor Neurone disease Association, which will fund a dedicated MND trials nurse/research coordinator and enable us to continue this important work.”

• The MND Association supports people living with MND, their families and carers across England, Wales and Northern Ireland, while driving forward the global fight against MND through investment in ground-breaking research.