March 21st, 2023
MDI strives to support and fund quality research into neuromuscular conditions. However, in research, we are sometimes missing the expertise of people with lived experience of the condition. MDI are committed to bringing your voice into research, which will help researchers focus on specific elements that will impact the community while explaining their research in easy-to-understand language.
Participant and Public Involvement is where people living with a neuromuscular condition actively contribute to neuromuscular research alongside researchers. It is a two-way relationship between members of the public partnering with researchers to help decide what research is done and how it is done. Examples of PPI include developing the research question, co-designing participant information leaflets, reviewing survey questions.
If you are interested in contributing your lived experience of a neuromuscular condition (you have the condition yourself or are a parent, sibling, relative, friend, carer) to research and influencing research studies please get in touch with us to learn more.
Please note that MDI shares information about neuromuscular conditions. We do not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.