Futures MND Qualitative Project

About the project

Futures MND is a collaborative piece of work, led by Clinical Neurologists working at the Euan MacDonald Centre and Health Boards across Scotland. It aims to better capture clinical data about people with MND, and where relevant, capture genetic information too. The data will help identify people who could be part of future trials, or potentially to understand patterns in how MND progresses.

My small part of the project is a qualitative, interview-based project with families, who have a member diagnosed with MND. I will talk to families about the value, for them, of this database existing and discuss with them what they think the risks are of being involved in research generally. The aim is to use the ‘patient voice’ to better understand what this data can and should do for people living in Scotland with MND.  Further, it will help us understand the best way to inform families about research opportunities, so that we are fully able to show respect and sensitivity.

Publication(s)

Primary location

Glasgow

Principal Investigator

Other people involved

Dr Suvankar Pal, University of Edinburgh; Prof Siddharthan Chandran, University of Edinburgh; Dr Seumas Bates, University of Glasgow

×