Debunking ten common myths about clinical trials

Here are a few of the most common myths demystified.

No, this is not the case, you have the right to ask! If you are interested in taking part in a clinical trial, you should talk to your treating team or ask our nurse here at Blood Cancer UK.

No breakthrough in new treatments are completely free from risks, but clinical trials are done with stringent safety measures in place. Before a clinical trial is started, researchers spend many months and likely years developing the design of the trial which is reviewed and overseen by experts and authorities in the field. You will also be fully informed of any benefits, side effects or possible risks of being on the trial.

There are hundreds of clinical trials that are aimed at looking at blood cancers in all stages, including people who have not yet had any treatment at all. Some clinical trials look to see if a current treatment that works well in treating a disease can be treated with a different drug that will cause less side effects. Some studies look at the long-term effects of treatments on patients.

You can change your mind about being in the clinical trial at any time and you do not have to give your reasons for this. Your treating team will then offer you standard treatment.

If you decide to withdraw, you will continue to be monitored to make sure that you don’t experience any adverse effects as a result of the trial.

In some clinical trials, an inactive drug, called a placebo may be given to test against a new drug. This is to make sure the new drug is effective. Placebos will never be given to patients who need active treatments and therapy for their blood cancer.

This is simply not true.

Clinical trials participants are monitored very closely to make sure they are safe. All clinical trials are very strictly regulated to ensure that patients are well cared for and kept safe. Research studies are strictly regulated to ensure that volunteers are safe and cared for.

In the vast majority of cases, participants find they received excellent care and really enjoy the experience.

Although there are benefits to living close to a clinical trials centre, being further away from one does not stop you being enrolled on a clinical trial.

Some participants may be offered the options of travelling to another centre for the clinical trial. Some clinical trials are conducted in a patient’s own home, with the support of nursing teams who will visit you. Some research studies might involve you completing questionnaires or being interviewed about your experiences over the phone.

Most of the blood cancer treatments that are available today are because of previous participation on clinical trials. It is the best way for researchers to find better, safer, kinder and more effective treatments for people with a blood cancer.

There are strict legal and ethical codes that must be followed during clinical trials that protects your identity. The information that is collected will not be associated to your name and while the data from the trial may shared in various ways ( medical experts, medical journals, trial sponsors), your name and individual results would never be shared publicly without your consent.

Your treating team will never try to force you to be on a clinical trial and will completely respect your decision to have standard treatment. They will not treat you any differently and will support you to make the decisions about your care that are right for you.