The centre’s Patient and Public Involvement and Engagement (PPIE) research group met for the first time recently to share their experiences and what matters most to them.
They discussed the centre’s research strategy, which aims to improve diagnosis, treatment and care for those living with MND throughout their journeys.
Dr Agam Jung, Director of The Rob Burrow Centre for MND, said: “It was wonderful to see so many patients and their families come together to help our researchers understand what’s really important to them.
“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.”
Amanda Attack, who has MND, attended the group with her husband Paul. He 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.”
Jean Wilson, who has recently been diagnosed with MND, joined the group with her husband Maurice. He 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 PPIE group will meet biannually with additional meetings as required. A number of research projects are already up and running at the centre, including the groundbreaking MND-SMART trial, which tests the effectiveness of different drugs on the disease.
Other research includes a project to use Magnetic Resonance Fingerprinting to detect upper motor neurone signals in the brain, and a new way of detecting and measuring the signs of MND, using artificial intelligence on videos of patients’ limbs and tongues. Both of these are funded by Leeds Hospitals Charity and aim to reduce the time it takes to diagnose MND.
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. By funding pioneering research, we’re working together towards earlier diagnosis, better treatments, and improved quality of life for people living with the condition.”
By 2031, The Rob Burrow Centre for MND aims to be recognised as one of the leading centres globally for translational MND research, delivering meaningful improvements in diagnosis, care, and treatment for people living with MND.
Find out more about The Rob Burrow Centre for MND, funded by Leeds Hospitals Charity: https://www.leedsth.nhs.uk/services/the-rob-burrow-centre-for-motor-neurone-disease/