Our vision and what we do
SMND RAG was established in September 2009 to enhance patient and public involvement (PPI) in MND research being carried out in the South Yorkshire and Humber region .
Our vision
The Sheffield Motor Neurone Disorders Research Advisory Group (SMND RAG) brings together people affected by MND to inform research. We are a committee of individuals that use our 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 researchers to improve patient care, understanding of the disease, and ultimately to develop new treatments.
What we do
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 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
We hold virtual meetings to review research projects, and keep in touch via monthly email updates. Researchers either submit written documents for the group to review, or come to our meetings to present and discuss their research. The SMND RAG has close links with the MND Association local branch to further aid research and share SITraN’s work with the wider community.
What people say
"The group’s involvement allows us to develop our research to match the priorities identified by individuals affected by MND"
Prof 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