Common Myths About Clinical Trials

Common Myths and Fears:

• Receiving placebo only or not receiving any treatment

In studies that treat myeloma, it is unethical to receive no treatment or a placebo on its own, unless the standard of care is no treatment or observation.

• Clinical trials are only appropriate as the “last option”

Clinical trials may be available for patients at every stage of their disease, including newly diagnosed patients, as well as those who have exhausted some or all of the available treatment options.

• No access to the treatment being studied when the clinical trial is over

After the completion of a clinical trial, if the participant is still on treatment and responding, they may be offered an “extension arm” by the pharmaceutical company or sponsor of the research. This arm enables the patient to continue taking the experimental treatment. In the event that the study drug is not commercially available and there is no extension arm, physicians and research coordinators may be able to arrange for the drug to be used under compassionate access.

• Clinical trials are not safe

Volunteers who participate in clinical trials are fully informed about the risks and benefits of the study. They are usually tested and assessed more frequently due to the necessity of monitoring their safety. Specialized doctors, nurses, and other research staff will closely monitor them throughout the trial, and for a long period after the trial is finished. This is done to monitor any potential long term or “latent” effects of the study treatment.

• Clinical trials are expensive for patients

Most clinical trials are not financially burdensome. Physicians will sometimes recommend participation in clinical trials to reduce costs for the patient. In most cases, hospitals, private organizations or pharmaceutical companies conduct trials at no expense to the patient. In certain provinces, paying out of pocket for any expenses incurred during a clinical trial is deemed unethical by their ethics boards.