Get involved
Join the Sheffield Motor Neuron Disorders Research Advisory Group!
We are seeking new members to represent the diversity of the MND community.
Are you:
• Someone who is living with or affected by MND - as a patient, family member or carer?
• Passionate about involvement in MND clinical research?
• Able to participate in group discussions with investigators and give your opinions?
• Willing to share your knowledge with others who are affected by MND?
About the role
Represent those affected by MND by sharing opinions
Provide their perspective as a person affected by MND into the development of clinical research projects
Attend regular virtual group meetings
Provide feedback on research proposals and study documents
Offer advice on the development of active PPI.
About the group
Enables patient and carer perspectives to be included in research proposals
Identifies and prioritises research topics important to patients and their families.
Gives patients and carers a more authoritative voice
Helps build public credibility and trust in clinical research
Identifies any barriers to patients' effective involvement in research, and assists with developing strategies to improve research participation
Reviews Participant Information Sheets and other patient-facing documents
Helps to write lay summaries for research proposals
Raises public awareness of MND research.
How to join
We are looking to recruit new members. To find out more about the group, please email smndrag@gmail.com. New members complete an application form and are required to sign a Confidentiality Agreement.
The group Chair will arrange a short call with you give an overview of the group, and what the expectations of members are. New members join their first meeting as an observer to get an introduction to the group and how we work together. All members are expected to follow the group's Code of Conduct to ensure members show mutual respect and treat each other with courtesy at all times.
Information and Questions
If you have any questions or would like further information about the SMND Research Advisory Group, please contact us by email smndrag@gmail.com.