Helping people with MND and their families to 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 implications 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 aim to develop a ‘decision aid’. This would be an interactive tool which can be used to help people make an informed choice around genetic testing that is right for them. The decision aid will present the available options and key information, and will help people to think about what matters the most to them. The decision aid is designed to be used alongside consultations with a healthcare professional, not replace them.
The researchers have developed a draft version of the decision aid 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 aid 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 a draft version of the decision aid. This can be a paper 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?
- People with MND, including people who have had or considered 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?
For more information, please contact Jade Howard, [email protected]
Study location
UK-wide
Funding
This study is funded by the MND Association