What questions should I ask before joining a trial?

Asking questions is a normal and expected part of deciding whether to join a clinical trial. Research teams are used to answering them, and a good team will encourage you to ask as many as you need before you sign anything.

Start with the purpose of the study. What is being tested, why is the research needed and what do the researchers hope to learn? Ask what is already known about the treatment, including results from any earlier studies.

Ask what taking part will actually involve. How many visits are there and how long does each one take? Will you need tests, scans or overnight stays? How long does the whole study run, and can visits be scheduled around work or family commitments? Some studies reimburse travel and other expenses, so ask what is covered.

Ask about the possible risks and benefits. What side effects have been seen so far? Is there a chance you will receive a placebo? Will you be able to continue your current medications? How does the study treatment compare with the care you would otherwise receive?

Ask about your rights and your care. Who do you contact if you have concerns between visits or feel unwell? What happens if you decide to leave the study? Will your own doctor be kept informed, and will you be told the results of the trial when it finishes?

It can help to bring a family member or friend to appointments, take notes and ask for information in writing. You do not need to decide on the spot, and you can take the participant information sheet home to discuss with your doctor before making a decision.