Sheffield Motor Neurone Disorders Research Advisory Group

Description

Sheffield Motor Neurone Disorders Research Advisory Group was set up in September 2009 to enhance patient and public involvement in motor neurone disorders research.

Our Aims

• Enable patient and carer perspectives to be included in research proposals
• Identify and prioritise research topics important to patients and their families
• Improve recruitment to research studies
• Aid researchers to write clear lay summaries and study information sheets
• Help share research findings with a wider audience
• Raise awareness of MND research

For further information please view our Terms of Reference

Public involvement in research

Our Vision

The Sheffield Motor Neurone Disorders Research Advisory Group (SMND RAG) brings together those affected by Motor Neuron Disorders (MND) to inform research. We are a committee of individuals that use our unique knowledge of living with the disease to join in the fight against it by helping researchers.

WHO WE ARE

Group members have all been affected by MND including patients, carers and family members. We are passionate about helping researcher’s improve patient care, better understand the disease and ultimately develop new treatments.

WHAT WE DO

Our main activity to advise researchers from the Sheffield Institute for Translational Neuroscience (SITraN), a state-of-the-art research centre dedicated to researching motor neurone disorders. We offer clinical and scientific researchers feedback on their research proposals, ideas to improve patient involvement and assistance in communicating their research to wider audiences.

HOW WE DO IT

The group hold quarterly face-to-face meetings and keep in touch via monthly email updates. Researcher’s either submit written documents for group members to review or come to our meetings to directly discuss their research. SMND RAG has close links with the MND Association local branch to further aid research and share SITraN’s work with the wider community.

We are open to new membership so please contact us if you are interested in joining the group.

http://smndrag.group.shef.ac.uk/