Cheney J.G. DrewI am a research fellow and senior trials manager for the Mind, Brain Neuroscience study portfolio at the Centre for Trials Research in Cardiff University. I have a background in pharmacological research, with particular reference to neurodegenerativediseases, having completed my PhD in Huntington’s disease.

Since transitioning to clinical research, I have been involved in the development and delivery of trials aimed at evaluating interventions (non-pharmacological and novel advanced therapies) in people with Huntington’s disease and other neurological disorders including Tuberous Sclerosis and epilepsy.

I am member of the European Huntington’s Disease Network advanced therapies working group, aimed at devising the most efficient and robust methods for evaluating novel, non-traditional, treatments for this rare disorder.

Given the complex and experimental nature of advanced therapies, I am particularly interested in how participants are approached, informed and provide consent to involvement in these trials. This includes listening to the participant voice as a central tenet of trial design. Read More Read Less