Developing new resources to support people with MND in having discussions about gene changes.
Principal Investigator: Dr Alisdair McNeill
Lead Institution: Sheffield Institute for Translational Neuroscience
MND Association Funding: £255,822
Funding dates: June 2025 - May 2028
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. These gene changes can be passed down through families. Previous research in this area has found that families find it hard to talk about gene changes in MND, and avoid sharing genetic test results with other family members. This project aims to better understand the experiences of people with MND, their family members, and healthcare professionals, and learn about their views on sharing information and what support they need when talking about gene changes in MND and genetic testing. This information will be used to create web-based tools that can help families have discussions and share the necessary information with the right people.
What could this mean for MND research?
This project could help to create resources so that people with MND feel more comfortable having discussions with their families about gene changes. If family members know there is a gene change linked to MND in the family, it can help them plan and give them choices such as having a genetic test themselves, considering options for starting a family and possibly taking part in clinical trials which target specific gene changes to try to stop or slow the disease.
Project code: 2404-794