Share your feedback on new tools to help people with MND and their family members make informed choices about genetic testing

All people with MND in England can have genetic testing to look for a gene change linked to their disease. Family members of people who are found to carry a gene change linked to MND can have a predictive test to see if they have the same gene change, and therefore have a higher chance of developing MND in the future. Genetic testing is an important decision which can have impacts for both the individual and their family. Previous research has found that not everyone receives all the information and support they need to make these decisions. 

Researchers at the University of Sheffield have developed ‘decision aids’. Decision aids are interactive tools which can be used to help people make an informed choice around genetic testing that is right for them. The decision aids will present the options around genetic testing and key information, and help people to think about what matters the most to them. The decision aids are designed to be used alongside consultations with a healthcare professional, not replace them. 

The researchers have developed the decision aids with people with MND, family members, and clinicians. They would now like to find out what people with MND and their families think of the decision aid, by asking them to read through it and complete a survey. The feedback given in this survey will help to develop the decision aids further. 

You can find out more about this study on our 'research we fund' page.
 

Taking Part

What does taking part involve?

People who take part will be given the decision aid. This can be a downloadable version or an online version. You will be invited to read through the decision aid in your own time, then complete an online survey which will ask what you thought of the decision aid and what could be made better. You will be asked questions about whether the decision aid helps to prepare people to make a decision. You will also be asked for some information about yourself, so the research team know who is taking part. The survey will take around 10 minutes to complete. 

Who can take part?
  • Anyone with MND, including people who have had or not had genetic testing
  • Relatives of people with MND, who have a form of MND linked to a change in a gene. Relatives should be eligible for predictive testing (close blood relatives), but the researchers would like to include people who have both had, and not had, predictive testing

How can I take part?

The decision aids can be found here. To give your feedback on the decision aids, please complete the survey. 

For more information, please contact Jade Howard, jade.howard@sheffield.ac.uk 

Study location

UK-wide

Funding

This study is funded by the MND Association