Disease sufferers to help research efforts

Martin Slack

MOTOR Neurone Disease sufferers are helping scientists by joining an advisory group set up by researchers in Sheffield.

The scientists at Sheffield University said the experiences of patients will help shed light on the disease and guide proposals for research in the future.

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New members are being recruited for the group, which will also involve carers of individuals with MND, others affected by the disease, and scientists and clinicians

It is hoped that sharing experiences will help determine best practice for the future. The group will meet four times a year with contact each month to review progress.

The team also hopes that by working with people who have first hand experience of the disease and members of the public they will be better equipped to communicate their research to a lay audience.

The university is currently in the process of constructing the Sheffield Institute for Translational Neuroscience (SITraN) – a 12m research institute which is set to make Sheffield a world leader for research into Motor Neurone Disease.

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The institute will bring together scientists and medical specialists from around the world 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, of the university’s Department of Neuroscience, said: “We hope this new advisory group will make a significant contribution to the development of treatments for this distressing disease.”

She added: “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.”

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Dr Christopher McDermott, a clinical senior lecturer added: “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 need to get patient opinion on the value of the research proposal, and ask them to suggest ways the research could be improved.”

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