A study is asking people aged 12 to 21 who have muscular dystrophy about their attitudes towards medical research and taking part in it. The results of the project will help to influence how young people who wish to take part in clinical trials are involved in the consent process.
In this PhD project, researcher Sarah Skyrme aims to interview young people with muscular dystrophy in order to better understand how they would approach making a decision to take part in medical research, and who might influence their decision – for example parents, other family members, peers and charities.
Before taking part in a trial, a doctor, nurse or other researcher has to ask potential participants for their permission. This is called obtaining ‘informed consent’. The process of consent follows strict guidelines to make sure that participants are not pressured into making a decision and they fully understand what they are signing up to.
This research gives young people an opportunity to speak up and express their own thoughts and priorities independent from their parents. The results of the project will help to influence how young people who wish to take part in clinical trials are involved in the consent process.
If you decide to take part in this study, Sarah will sit and talk with you about your thoughts on muscular dystrophy and medical research. The interview can be at your house if you like and how long it lasts is up to you. Your name and other personal details will not be written down and you can choose whether the interview is recorded or not. You will get a copy of the final report when it is finished.
The project is funded by the Economic and Social Research Council, in partnership with Treat-NMD and is based in the Policy, Ethics and Life Sciences Research Centre at Newcastle University.
If you are interested in being interviewed by Sarah please phone: 07758 659840 or email: Duchenne.Research@ncl.ac.uk