SMND RAG was set up in September 2009 to enhance patient and public involvement in motor neuron disorders research.
The Sheffield Motor Neuron Disorders Research Advisory Group (SMND RAG) brings together those affected by 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.
Group members have all been affected by MND including patients, carers and family members. We are passionate about helping researchers improve patient care, better understand the disease and ultimately develop new treatments.
Our main activity is to advise researchers from the Sheffield Institute for Translational Neuroscience (SITraN), a state-of-the-art research centre dedicated to researching motor neuron 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.
The group hold quarterly face-to-face meetings and keep in touch via monthly email updates. Researchers 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.
"The group’s involvement allows us to develop our research to match the priorities identified by individuals affected by MND"
Dr Christopher McDermott, Consultant Neurologist
“Lay summaries are exceptionally important so receiving feedback from a lay audience has been extremely helpful and constructive”
Dr Laura Ferraiuolo, Research Associate