The Western Health and Social Care Trust has unveiled Northern Ireland's first specialist research nurse for motor neurone disease (MND), a role based at Altnagelvin Hospital and fully funded by the Motor Neurone Disease Association.

The position forms part of the Association's £7.2 million Research Nurse Network, intended to open up more opportunities for people diagnosed with MND to participate in vital studies across Northern Ireland, England and Wales.

Research nurses guide patients through the research landscape, matching them to suitable trials, explaining what participation entails and offering continuing support for those who choose to enrol.

Working from the Clinical Translational Research and Innovation Centre (C-TRIC) and in close collaboration with the Neurology Service at Altnagelvin, the new role will be embedded within the existing multidisciplinary service that supports people with MND in Northern Ireland.

Experienced Specialist Neurology nurse Jacqui McKee has taken up the post. She said: "I feel privileged to be the first MND Association funded Research Nurse in Northern Ireland. The funding will help C-TRIC at Altnagelvin 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." Sharon O'Kane became an Association visitor for the MND Association's Northern Ireland branch in 2020, shortly after her brother Johnny died from the disease, leaving behind a young family. She said: "Having witnessed first-hand what Johnny endured, I started volunteering as an Association visitor. My role is to offer emotional support, help and advice to people with MND and their families. It is extremely rewarding and I feel very privileged to be in the position to be able to help.

"The most difficult thing about talking to people with a diagnosis of MND, and their families, is the sense of devastation they feel not only from getting a diagnosis but the knowledge there's presently no cure.

"That's why this research nurse will be such a huge asset to us here in Northern Ireland. To have someone to be able to support and advise people, potentially offer them a chance to participate in clinical trials and most importantly give them some hope for the future when their outlook is bleak, is immense."

Over time, MND Association Research Nurses will be integrated into the 24 MND Care Centres and Networks across England, Wales and Northern Ireland. Recruitment for several other sites is already under way as part of the wider rollout.

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."