Explainer: What is a cancer trial and how do I find out if I can take part

With more than 24,000 people newly diagnosed with cancer each year in Ireland, Cancer Trials Ireland is dedicated to finding new ways to prevent, find and treat cancer.

It currently has more than 110 trials open and is recruiting new patients.

The charity is hosting an information webinar on International Clinical Trials Day on Tuesday, May 20, from 2.30-3.30pm, offering an overview of trials here, how they work, and how to access them.

The session will feature the perspectives of both cancer researchers and patients, with contributions from Prof. Gerry Hanna, Vice Clinical Lead, Cancer Trials Ireland, Dr Claire Kilty, Head of Research at the Irish Cancer Society, and patient advocate Jed van de Poll.

Broadcaster and former GP, Ciara Kelly, will host the webinar which is free of charge to members of the public - to register, visit www.cancertrials.ie/JustAsk.

For Prof Hanna, the ambition is to achieve an up to 75% five-year survival rate for people diagnosed with cancer within the next decade:

“We’re seeking to constantly improve outcomes for people with cancer and we’ve gone from 25% of people being alive five years after a cancer diagnosis 30 years ago, to now over 50%. We want to get that figure up to 75% in the next ten years and one of the ways we can do this is through clinical trials in finding the next generation of treatments that will improve outcomes for people with cancer.

“The intention with a prospective trial treatment received by patients is that it should be at least as good as the standard of care and hopefully better.

“We also know that in hospitals that run clinical trials, the outcomes are generally better, even for those patients who are not taking part in the trial, as the quality of clinical care improves for everyone. With this campaign, I would encourage any person going through cancer treatment to ‘just ask’ their doctor if there is a cancer trial currently available that would be suitable for them.”

When it comes to the attitudes of the public to clinical trials, a survey by Cancer Trials Ireland last July yielded interesting findings:

• 18% either know of someone who has taken part in a clinical trial, or have taken part themselves, while 62% would be willing to take part in one
• 70% would take part in a trial to potentially help others get better treatment for their health issues in the future, while 38% would do it to have a longer life, and 32% would sign up to access a new treatment before it’s widely available, or to cure their disease (30%)
• Over half would get involved in a trial to improve their health and wellbeing, 44% would do so to have a more active role in their healthcare if ill, and 40% would do so to access medical care and more frequent health checks as part of treatment.
• Interestingly, 77% know someone who has had cancer, or have had cancer themselves.

What is a cancer trial?

Most involve testing new drugs or therapies which show promise, or testing new combinations of existing drugs or therapies. Some may compare new drugs with treatments in use currently or occasionally with a placebo, where the standard of care is having no treatment. They may also test surgical techniques, medical devices, or physical therapies, as well as investigate blood samples and tissues.

There is no charge for taking part in a cancer trial. Details of almost all of those currently available in this country can be found at www.cancertrials.ie where there is a search engine for trials.

What type of treatment might I receive?

Most trials involve testing new drugs, surgery, immunotherapy or radiotherapy treatments, or combinations of existing treatments, which show promise. Not all trials involve medicines - they can include devices, new techniques of treatment delivery, or diet and exercise regimes.

Are there any other benefits to taking part in a trial?

One of the key advantages is that you will likely receive even more care than might otherwise have been the case, as you will be closely monitored by your study doctor and the nurse support team. You will likely have to visit hospital more often for blood tests, scans and other tests. This allows for more opportunities to ask about your treatment, progress and general well-being.

Are there any restrictions on taking part in a cancer trial?

Each has strict criteria on who can take part. It may be restricted to a particular type or stage of cancer, or for patients who have already received certain treatments, or for a certain age group. A trial may exclude women who are pregnant to avoid any possible danger to the baby, or people already taking a particular drug that may interact with the treatment being studied, or those who have had other conditions or illnesses.

Are you locked into the trial once you sign up?

No. You are free to withdraw from a trial at any stage and this decision will not affect your relationship with your doctor.

Can you explain some of the jargon used?

A ‘randomised’ trial is where a computer, rather than a doctor, decides which treatment is given. This decision will be random. It will be due to chance alone, and not based on your doctor’s decision.

A ‘single blind’ trial is where you are not told the treatment that you are receiving.

A ‘double blind’ trial is where neither you or the doctor knows.

An ‘open label’ trial is where both you and the doctor are fully aware of the treatment being provided.

What questions should I not forget to ask the cancer trial team?

It is helpful to know if you can take part in more than one trial and if participation could mean missing out on future trials.

It is also very useful to know likely side-effects and if there is anything that you are not allowed to do while on the trial.

For more information on the work of Cancer Trials Ireland, visit www.cancertrials.ie, or call the Irish Cancer Society’s Cancer Nurseline on Freephone 1800 200 700. Cancer Trials Ireland is partly funded by the Health Research Board and the Irish Cancer Society.