WHAT ARE CLINICAL TRIALS?
Clinical trials are a type of research used to find out if new treatments and techniques are safer and more effective than the ones that already exist – by testing them on people. They are a vital way of continuing to develop better treatments.
Clinical trials might look at:
- New drugs
- New types of radiation therapy
- New surgical methods
- New ways to combine treatments
- New treatments like gene therapy
You might be given the option to take part in a clinical trial as part of your treatment. It’s only ever an option though, and while we’d recommend you do at least weigh up the pros and cons, it’s totally up to you whether you want to get involved.
IS IT SAFE?
Don’t worry, clinical trials happen right at the end of a long, tightly controlled process. You won’t be the guinea pig for some wild new treatment dreamed up yesterday and served from a witch’s cauldron. And doctors and researchers will only suggest you take part in a clinical trial if they think it’s right for you.
All clinical trials are designed to be as safe as possible, and young people tend to be involved in Phase 3 trials, which are the final stage of testing before treatments are launched. Phase 3 trials compare new and existing treatments to see which ones work best.
Many of the standard treatments for cancer started out in clinical trials, and many people now have a better quality of life thanks to knowledge gained during clinical trials.
IS IT WORTH IT?
It’s important to remember that the treatment you are given during a clinical trial may or may not be better than existing treatments. That’s what the trial is designed to find out.
You’ll be closely monitored and probably get even more attention than normal, which means changes to your health usually get picked up more quickly. And it’s often the case that people on clinical trials see better results than similar patients not involved in a trial.
And, by testing new treatments, you’re also helping to improve the care given to other young people in the future.
Phase 3 trials usually involve hundreds of people in lots of different places. A computer randomly splits everyone into two groups, with half – the trial group – given the new treatment and half – the control group – given the best treatment that’s already available. The results are compared to see which treatment is most effective.
Whichever group you’re in, being involved in a trial means you might need to have more check-ups than normal, and these might last slightly longer. You might have more blood tests, scans and other tests too.
If your doctors think the trial isn’t working for you, they’ll take you off it. And, if you’re not happy, you can withdraw at any point. Your doctors will understand, it won’t affect the rest of your treatment and you won’t be asked any awkward questions.
MYTH #1: You’ll be treated like a guinea pig.
Definitely not. You get a very high level of care. No exceptions.
MYTH #2: You’ll be given sugar pills.
Dummy treatments like sugar pills (you might hear them called placebos) are very rarely used in cancer trials. You’re either given the best available treatment or a new treatment that’s being tested. You’ll only be offered placebo treatment if that’s the best way to see how effective a new treatment is. And if placebo treatments are involved in your trial, you’ll be told about it before being asked if you want to take part.
MYTH #3: Trials only take place at big hospitals.
Nope. Many trials now happen at smaller hospitals, so you might not need to travel a long way to take part in one. However, some trials do only take place in big centres – particularly if they involve rare cancers or use new drugs. Taking part in one of those does mean hitting the road.
MYTH #4: Once you’ve said yes, you’re stuck.
This one’s not true either. If you change your mind at any point – including during treatment – you can leave the trial. Not a problem at all.
MYTH #5: You’ll be kept in the dark.
Noooo. The research team has a duty to make sure you understand what’s going on. So ask as many questions as you can think of. You’ll be given the contact details for someone you can talk to at any time.
IS A CLINICAL TRIAL RIGHT FOR YOU?
Only you can decide if you want to get involved in a clinical trial. Our advice? Ask questions. Lots of questions. Write them down before appointments so you don’t forget anything. Find out exactly what’s involved. Talk it through with people close to you. And don’t rush into a decision.
What you decide is 100% up to you. It’s not a problem at all if you choose not to get involved.
Alternatively, if you’re interested in getting involved in a trial but it’s not been mentioned, talk to your doctors. They might know about a trial that would be suitable for you.