My name is Dr Cheney Drew, and I am a Research Fellow and Senior Clinical Trials Manager based in Centre for Trials Research in Cardiff University.
Outside of my work at Cardiff University, I have many passions, from ultra-marathon running to arts and crafts, as well as baking cakes. On one occasion, I baked a brain cake for Halloween and was reliably informed by neurosurgical colleagues that this was a faithful, and perhaps disturbing representation of the real thing!
I am involved in the design and delivery of high-quality clinical trials, focusing on neurodegenerative and other neurological disorders. This can involves introducing new medicines, or different ways of using existing medicines to non-medicine based ‘interventions’ such as exercise to try and combat disease.
I am also facilitating BRAIN involve, the public and patient involvement group that helps to inform our research activities.
This year, I worked with Dr Emma Lane to understand the experiences of those who take part in complicated clinical trials for degenerative brain conditions, with a focus on Parkinson’s disease.
Why I’m interested in this area of research
There are two big problems we encounter when running a clinical trial: persuading people to take part (recruitment) and making sure that people continue to participate until the end (retention).
These issues make it more difficult to make firm conclusions about the medicine or treatment being tested because there is not enough data to show that the changes to people taking part are because of the treatment and not due to chance.
We hope that by better understanding the participant experience, we can design clinical trials that make it easier and more acceptable for people to take part in and remain, maximising both recruitment and retention and making sure that the clinical trial has the best chance of providing a definite answer about the treatment being studied.
We found that taking part in a clinical trial is a big undertaking for the participant, their partners and close family members, though rewarding on the whole.
Participants said that ongoing communication between them and the research team was extremely important, particularly when the trial finished for them but the results are not available for some time.
Also, the transition from being a participant back to a patient can be really difficult for the participant and that needs to be carefully managed, as well as providing participants with payment for travel and accommodation upfront so they are not left out of pocket.
You may think that some of these considerations are not particularly surprising and are often already factored into clinical trial designs. However, our data has demonstrated that small changes in the way this is managed (i.e. paying for those costs upfront and not requiring the participant to apply for reimbursement) would make the experience much better for participants.
We created some short information videos and accompanying documentation that can be used to support people with Parkinson’s disease in taking part in clinical trials, using the data from our study.