Inherited forms of MND are rare, affecting up to 10% of people with the disease. Over the years, scientists have discovered several gene mutations linked to inherited MND, and can now find the gene responsible for the disease in around 70% of familial cases. However, knowing there is MND in the family creates new choices, opportunities and uncertainties for family members, including how they communicate around the disease; making decisions over presymptomatic genetic testing; and navigating choices around starting a family.
The study aims to improve understanding on the experiences of families who have been affected by inherited MND. Researchers from Aberdeen are working with the Health Experiences Research Group, University of Oxford, and their partner the DIPEx Charity, to produce a new section on the research-based website www.healthtalk.org. Healthtalk is a web resource used by patients, families and healthcare professionals, based on the lived experience of different health conditions. The new resource will be available from 2022 and will be a lasting source of information and support for families affected by inherited MND.
Researchers are interested in talking to families affected by inherited MND about their experiences. They would like to interview people with inherited MND, people who may be at risk in the future, and partners and other relatives, including family caregivers.
If you are interested in hearing more about the project, or want to talk about how you can get involved, please contact Jade Howard at firstname.lastname@example.org for further information.
Update 27th April 2020: In light of the COVID-19 outbreak, interviews will be carried out remotely, using video communication, as well as phone and email interviews. The researchers are still recruiting participants for the study and would love to hear from people who may be interested in taking part.