Leeds MND Centre Puts Patients at Heart of Research

Patients and families affected by Motor Neurone Disease (MND) are helping shape research in Leeds that could lead to earlier diagnosis, better treatments and improved care, it has been reported.

The Rob Burrow Centre for MND has brought together patients, carers and medical staff as part of a bid to ensure future research reflects the needs of those living with the condition.

The centre’s new Patient and Public Involvement and Engagement (PPIE) research group recently held its first meeting.

Those attending shared their personal experiences, discussed their priorities and explored how research could improve the lives of people affected by MND.

Among the issues raised were hopes for a cure, the importance of early diagnosis and the need for effective treatment.

Dr Agam Jung, Director of The Rob Burrow Centre for MND, welcomed the opportunity for patients and families to influence the centre’s work.

He said: “Many families spoke about their hopes for a cure, and early diagnosis and treatment is also very important to patients. The research we carry out here in Leeds can help make a real difference in supporting people living with MND and those who will be diagnosed in the future.”

Among those attending was Amanda Attack, who has MND, alongside her husband Paul.

The couple previously helped raise money for the centre’s building and are keen to remain involved as its research develops.

Paul said: “We’ve always tried to get involved with the centre as much as we can. We helped raise money for the building and we want to be part of it as it grows. The teams here need to hear from us to get the essential information from a patient and carer perspective to build up a picture and be able to move research forwards.”

Another couple taking part were Jean and Maurice Wilson.

Jean was recently diagnosed with MND, and her husband hopes the group’s work will help him better understand the condition and support his wife.

Maurice said: “I don’t know much about MND and I need to learn fast. I’m looking for anything that will help my wife.”

The group’s involvement comes as researchers at the Leeds centre work on several projects aimed at improving diagnosis and treatment.

These include the MND-SMART trial, which is testing how effective different drugs are against the disease.

Scientists are also exploring new ways to identify the condition earlier.

One project uses Magnetic Resonance Fingerprinting to detect signals from upper motor neurones in the brain.

Another uses artificial intelligence to analyse videos of patients’ limbs and tongues, helping researchers identify and measure signs of MND.

Both projects are funded by Leeds Hospitals Charity and aim to reduce the time patients wait for a diagnosis.

Rebecca Baldaro-Booth, Director of Grants and Impact at Leeds Hospitals Charity, said: “The Rob Burrow Centre for MND has a bold ambition to become a world-leading centre for MND research, and the voices of patients and families are central to that journey.”

The new patient and public involvement group will meet twice a year, with additional meetings arranged when needed.

By 2031, the centre hopes to become one of the world’s leading centres for research that translates scientific findings into better diagnosis, treatment and care.

Its wider ambition is to ensure research carried out in Leeds leads to meaningful improvements for people living with MND, both now and in the future.