On the front-line of clinical trials: an MS research nurse’s perspective
Leilani Cabreros has worked as a nurse in the NHS for 22 years. And she's now the Senior MS Research Nurse at Imperial College Healthcare NHS Trust. She shares four things to know about what it’s like taking part in clinical trials for MS.
1. We’ll get to know each other really well
Most people haven’t heard of research nurses. But we’re at the front-line of delivering clinical trials. We’re often the first person someone talks to if they’re interested in taking part in a study. Then we do lots of the assessments and monitoring throughout the trial.
So depending on the study, we might see people every month or every few months. Whether it’s just a phone call or a visit to have an infusion or give a blood sample, we’re constantly in touch. That participant-nurse relationship is really important to us.
2. We’re all helping to improve lives in the future
Sometimes when people hear the word research, they worry they’re just going to be used as guinea pigs. I reassure them we’d never think of them like that.
What the research nurses and our participants have in common is we’re all trying to do something that counts. I know people don’t always feel the impact of the research themselves. They might be taking a placebo. Or the improvements might be too small to notice. But by helping get the answers to these big questions, we’re improving people’s lives in the future. That contribution is really important.
3. We’ll go out of our way to look after you
Because we spend a lot of time with people, they often tell us how they’re feeling. So if someone says ‘I have this pain’ or ’I’m feeling really anxious at the moment’, we’ll follow it up. Even if it’s not part of the study.
For instance, we might contact someone’s GP and let them know what’s going on. People like to feel that their health is really being closely monitored and they’re being looked after. Especially because, otherwise, people often only get to see an MS nurse or neurologist once a year or even less.
4. We’ll give you a window into the world of research
We work on lots of different studies. We’ve had people taking part in the MS-STAT2 trial. We’ve just enrolled the first two participants in the StarMS trial. And we're involved in trials being run by drug companies.
This means we can update our patients on what’s happening in the world of MS research. We can tell them which drugs are being looked into right now. Often when someone finishes a study, they ask us to let them know about other studies they could join.
