Research blog: International Clinical Trials Day

Hannah Grocott is a research worker in the Department of Old Age Psychiatry at the Institute of Psychiatry, Psychology & Neuroscience.  The team she works in is responsible for the day-to-day running of clinical trials, including recruitment, cognitive testing, biological sample collection, neuroimaging, and much more.  In a special research blog for International Clinical Trials Day, Hannah tells us about her work:

In our team, generally each of us has one or two main trials to look after, but we make sure we’re up to date on each other’s trials, too.  It’s good for us as researchers, because you get to learn more and do different things – if you’re just doing the same tests, day in, day out, it can get a bit dull, so the way we work mixes things up a bit.

NILVAD and MADE are the trials I’m currently working on.  They’re both medication trials looking at repurposing – the drugs are currently available for treating high blood pressure and infections, but there’s been some research which suggests they might be helpful with Alzheimer’s, so we’re testing that.  We’re looking to either slow down the progress of dementia, or see if the drugs have disease course modifying effects, which could potentially stop the dementia getting worse. 

Both trials involve taking the medication for eighteen months or two years, and we see participants quite regularly over the course of that time to administer the medications and do whatever the tests are for that study at various time points.  We also do continuous safety checks and monitor any adverse events or side-effects.

The way we recruit to trials has changed a lot recently.  We’ve established better links with the memory services which we recruit our participants from, and they understand that research doesn’t have to be a burden for patients – it’s actually something that a lot of people want to take part in, but they just don’t know they can!  We work closely with the memory services to approach people once they’ve received a diagnosis, to let them know that there are opportunities to participate in research, and give them the chance to find out more if they’re interested.

With both of the trials I’m working on, we do a lot of home visits.  I’ll usually do one or two patient visits in a day, where I drop off the medications, do various physical health checks, or tests if it’s an assessment visit, and then come back to the office.  Every visit involves filling out paperwork, which then needs to be put on the right systems, so you’re logging everything – patient files, our own internal database, the wider trial system. 

My favourite part of the job is how much contact with patients I have – I like how much we get out to see people.  When you’re visiting people over a long period of time, you do build up a nice bond with them, and actually it can be quite sad when a trial comes to an end!  Generally, people are really positive about taking part – sometimes because they hope it might help them, but usually because they want to help people in the future. 

It can be really difficult when people are declining, particularly when you see the impact it has on their loved ones.  People don’t always have someone they can talk to, so sometimes when I’ve been on a home visit, people’s carers have got quite upset, or wanted to talk about how difficult it is.  This can be hard, because you know how difficult it is for the person, but at the same time, you’re there in your capacity as a researcher, so you’re not in a position to give medical advice.  If I’m worried about someone, I’ll contact their care coordinator at the memory service, or will talk to a colleague about what we should do.

The most rewarding aspect of my job is definitely the population of older people who I work with – they’re just such a lovely group, especially the way they care for each other, the way they look after each other.  Sometimes participants thank me for letting them participate in the trial, and I just have to say, no, thank YOU so much!

If you would like to find out what it’s like to participate in research, read our perspectives on taking part in research.

Our website has more information about participating in dementia research and in other research projects at the NIHR Maudsley BRC.