Investigating current trends around genetic testing for MND and developing resources to support nurses and healthcare professionals with carrying out genetic testing.
Principal Investigator: Dr Alisdair McNeill
PhD Student: Francesca Danks
Lead Institution: University of Sheffield
MND Association Funding: £119,732
Funding dates: October 2025 - March 2029
About the project
Some people with MND have a change in a gene which contributes to the development of the disease. People who are diagnosed with MND in England are able to have a genetic test to see if they have one of these gene changes. However, people are not always offered these tests and one reason for this is that clinicians feel they don’t have time or knowledge to have discussions about it. This project aims to explore whether nurses and other health professionals could be supported to carry out genetic testing for MND. This will involve gathering the views of people with MND, their families and clinicians to see what they think and how it may work. If it is found to be accepted and practical, an online training course and resource would be developed and tested in the clinic. The resource would help to guide nurses and other health professionals through the genetic testing process.
What could this mean for MND research?
This project could help to improve the experience of genetic testing for people with MND and mean that more people are offered genetic testing at the right time and given the support they need by trained health professionals. This is important as the results of genetic testing can mean that some people with MND will be able to access clinical trials and potential treatments that are targeted at their gene change.
Project code: 2414-796