The Sheffield MND Research Advisory Group
The Sheffield MND Research Advisory Group is looking for members and associate members to help shape research proposals in the Neurosciences Department of the University of Sheffield through their involvement with MND.
"Patient and public involvement allows us to develop our research programmes to match the priorities identified by individuals affected by MND"
- Prof Christopher McDermott
What is the aim of the project?
The advisory group aims to get more patient and public involvement in MND research. It wants to use the experiences of those living with and affected by MND to better understand and inform research proposals. It also aims to recruit more people with the disease into research programmes which already have funding and approval, in order to gain more effective and reliable results which can be developed into treatments.
How can I get involved?
People with experience of MND – either through living with it themselves, caring for or working with a patient - can be involved. They can become a full member, or an associate member contributing to the group’s work remotely.
What will I be asked to do?
The group meets four times a year in Sheffield, with updates sent each month by post and email. Reasonable travel expenses will be covered for anyone travelling from within South Yorkshire and North Derbyshire. Associate members are also welcome to provide feedback and input remotely, without committing to the quarterly meetings.
Key tasks include:
- Providing first-hand knowledge and experience of the disease to scientists and clinicians which can then be included in research proposals
- Helping to identify and prioritise topics for research from a patients’ point of view
- Helping scientists write lay summaries for research proposals – providing feedback on documents and advice on how to make them more ‘user-friendly’. This is because presenting complex studies in easy to understand language is key to achieving success in funding applications
- Helping improve recruitment to research studies by identifying barriers for patients and carers.
The Sheffield MND Research Advisory Group is appealing for new members. Anyone who would like to find out more about what role they can play should visit the Sheffield MND Research Advisory Group website, or contact Annette Taylor at firstname.lastname@example.org.