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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Dr
alisdair
mcneill
a.mcneill@sheffield.ac.uk
Jade
Howard
jade.howard@sheffield.ac.uk
Jade
Howard
jade.howard@sheffield.ac.uk
Dr
alisdair
mcneill
a.mcneill@sheffield.ac.uk
Systemic atrophies primarily affecting the central nervous system
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Genetic variants play a major role in MND, in our recent study 21% of MND patients had a causal genetic variant. A genetic diagnosis for MND has clinical benefits; it permits access to reproductive medicine options, helps relatives understand their risk of inheriting MND and allows recruitment to personalised medicine trials. Our scoping review identified evidence of underutilisation of genetic testing in MND. We will develop a research-informed patient decision aid (PDA) to support people with MND, and their families, make choices about genetic testing. We will undertake detailed interviews with MND patients, and their first degree relatives, to understand their views on genetic testing for MND and support needs when considering testing. A series of clinic consultations in which genetic testing is discussed with MND patients will be analysed, along with a cross-sectional survey of clinicians. This will gather information on how clinicians currently offer MND genetic testing and how they might integrate a PDA into practice. A PDA to support genetic testing in MND will be designed based on our study findings. The PDA will be co-designed using an iterative process of testing, refinement and observation. Integration of the PDA into clinical practice will be supported by a strong dissemination plan, including online training sessions in PDA usage for patients and clinicians.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Observational type: Qualitative;
You can take part if:
You may not be able to take part if:
• Age < 18 • Significant cognitive impairment that would render participant unable to respond in a meaningful way in interviews or recorded consultations • Significant communication difficulties which would make participation impossible.
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
Dr
alisdair
mcneill
a.mcneill@sheffield.ac.uk
Dr
alisdair
mcneill
a.mcneill@sheffield.ac.uk
Jade
Howard
jade.howard@sheffield.ac.uk
Jade
Howard
jade.howard@sheffield.ac.uk
The study is sponsored by SHEFFIELD TEACHING HOSPITALS NHS FOUNDATION TRUST and funded by MOTOR NEURONE DISEASE ASSOCIATION .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Read full details
for Trial ID: CPMS 52302
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