Developing a Nurse/Health Professional led pathway for genetic testing in MND clinics
All people diagnosed with MND in the UK are eligible for genetic testing within MND/neurology clinics, to see if they have a change in a gene which contributes to the development of MND. However, this is not consistently offered to everyone. Nurses and allied health professionals (AHPs) are well placed within the MND multidisciplinary team to support genetic testing.
The researchers would like to design a nurse/AHP-led pathway for genetic testing in MND clinics, with input from people living with MND and their carers. As part of the wider project, they would like to conduct interviews with people with MND and those involved in their care to explore their views and needs surrounding the development of a nurse/AHP-led pathway for genetic testing.
You can read more about the study on our research we fund page.
How will this study help people with and affected by MND now and/or in the future?
The researchers hope that a nurse/AHP-led pathway will support genetic testing being offered and undertaken more consistently. Genetic testing is highly important for participation in clinical trials for treatments which target a specific gene change, access to the treatment Tofersen (for those with SOD1 MND), providing access to the wider family for predictive and/or reproductive genetic testing and contributing to research on MND and genetics.
Taking Part
What does taking part involve?
People who choose to take part will be asked to complete an interview on their views on how genetic testing is offered. They will be asked about topics such as the role of different healthcare professionals in offering genetic testing, and what support should be offered around testing.
The interview can be carried out remotely (by telephone, video call or email), or in person at the Royal Hallamshire Hospital (Sheffield), depending on what participants prefer. The interview would take around 30-60 minutes. The interview would be audio recorded with the participant’s permission.
Who can take part?
People living with MND and their caregivers.
How can I take part?
For further information or to take part in the study, please contact Francesca Danks at fdanks1@sheffield.ac.uk
Study locations
UK-wide
Funding
This study is funded by the MND Association