18 February 2010
Advisory group set to inform future MND research
Clinical researchers and scientists at the University of Sheffield have set up a new advisory group which will utilise the experience of Motor Neurone Disease (MND) patients to help shed light on the disease and inform future research proposals.
The group, which is currently recruiting new members, will involve MND patients, carers of individuals with MND, others affected by the disease and scientists and clinicians, sharing their experiences to help determine best practice for the future. The group will meet four times a year and share contact each month to review their progress.
It is hoped that scientists and clinicians will benefit from working with members of the public in a number of ways. By increasing the input of those living with and affected by the disease, researchers will be able to match the research projects undertaken with the priorities of those with experience of MND
The team also hope that by working with people who have firsthand experience of the disease and members of the public they will be better equipped to write about the research undertaken in easy-to-understand language for a lay audience.
The group are also aiming to undertake initiatives to facilitate the recruitment of MND patients into research studies, to gain more effective results which can be developed into future treatments for the disease.
The University is currently in the process of constructing the Sheffield Institute for Translational Neuroscience (SITraN) - a new state-of-the-art £12 million research institute which is set to make Sheffield a world leader for research into Motor Neurone Disease (MND).
The institute, which will be run by staff at the University, will bring together scientists and medical specialists from around the globe who will be dedicated to finding the causes and cure for MND, as well as other degenerative conditions such as Parkinson's, Alzheimer, Spinal Muscular Atrophy and Multiple Sclerosis (MS).
Hannah Hollinger, Dementias and Neurodegenerative Diseases Research Network (DeNDRoN) MND Co-ordinator from the Department of Neuroscience at the University of Sheffield, said: "We hope this new advisory group will make a significant contribution to the development of treatments for this distressing disease. We are still trying to understand the causes of MND and develop effective treatments. The experiences of group members will be invaluable to our future research."
Dr Christopher McDermott, a Clinical Senior Lecturer at the University and Honorary Consultant Neurologist, said: "To enable patient, carer and public involvement in MND research in Sheffield we have established the Sheffield Motor Disorders Research Advisory Group (SMD-RAG). Patient and public involvement allows us to develop our research programmes to match the priorities identified by individuals affected by MND. Whenever we are writing research proposals we involve SMD-RAG at an early stage, to get their opinion on the value of the research proposal, to ask them to suggest ways the research could be improved and to suggest any ways in which we can minimise the burden for patients who participate in the research." For further information please contact: Lauren Anderson, Media Relations Officer, on 0114 2221046 or email l.h.anderson@sheffield.ac.uk
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