Why asking questions matters
Being informed helps you feel more confident about your choices and what to expect. There are no "right" or "wrong" questions. What matters is understanding the information in a way that makes sense for you.
Asking questions can also help you:
- Understand your options
- Weigh benefits and risks
- Feel more prepared for what's ahead
Taking part in a clinical trial is your choice, and your consent is ongoing. You can ask questions and change your mind at any time before or during the trial. If you withdraw, the research team will explain what this means and discuss what happens to your information.
Tips for talking with your doctor
If you are going to speak to your doctor about trials, it might help if you:
- Take a family member or friend with you for support
- Plan what you would like to ask before your visit
- Write your questions down so you don't forget them
- Ask follow-up questions or new questions during or after appointments
- Use your phone or a recorder to remember what was discussed
Remember:
- You don't need to ask every question listed on this page
- These are suggestions - you can choose the questions that matter most to you
- You can ask questions over more than one appointment
- It's okay to take your time and come back with more questions later
For more tips about how to speak with your doctor and healthcare team, you may like to watch these videos developed by Cancer Council Victoria.
Questions to ask your doctor about clinical trials
You can ask these questions of your doctor, study coordinator, nurse, or other members of the clinical trial team. Clinical trials are not always about new treatments. Some studies look at improving quality of life, symptoms, care experiences, or ways to improve support. The questions below can be adapted depending on the type of study.
About the clinical trial
- What is the purpose of this clinical trial and why is it being done?
- What type of study is this?
- Who is running this trial?
- How many other people will be involved?
- How is the safety of participants being checked?
- How long does the study last?
- How long would I need to be involved?
- Will the trial use a placebo?
- Is this trial (or parts of it) run as a teletrial or closer to home?
- Can you go through the participant information with me?
- Can I have the participant information in another language?
Your care and treatment during the trial
- What will I have to do if I take part (for example, appointments, tests, surveys, or interviews)?
- What treatments, tests, procedures, or activities are involved?
- Are there any extra tests?
- How is this different from the treatment or care I would receive if I don’t join the trial?
- Who will oversee my cancer care while I’m participating?
- Will I need to see a different doctor or team?
- Where will I receive my care?
- Will my GP or other doctors be informed that I am in the trial?
- Can my usual healthcare providers stay involved in my care?
Working with the trial team
- Who should I contact if I have questions or concerns?
- Will I have a main contact person (such as a study coordinator or nurse)?
- How do I contact the team after hours or in an emergency?
- What should I do if I feel unwell, notice side effects, or have concerns related to the study?
- When should I contact the trial team versus going to my GP or hospital?
- Will I be given written information or contact details to take home?
Appointments and practical arrangements
- How often will I need to attend appointments?
- How long will each visit take?
- Can any visits or tests be done closer to home?
- What happens if I need to reschedule an appointment?
- Will my day-to-day life be affected?
- Will I need to take time off work?
- Can I travel interstate or overseas while participating?
- Is participating free (including tests, treatment and travel)?
- Can I be reimbursed for out-of-pocket expenses?
Benefits, risks and side effects
- What are the possible benefits of joining this trial (for me or for future patients)?
- What are the possible risks?
- Are there any risks, side effects, or inconveniences I should know about?
- How will side effects be treated?
- Can I still have other medicines or complementary therapies?
Samples, data and privacy
- Will you collect extra samples (such as blood or tissue) for research?
- What will happen to my samples?
- How will my personal information be kept confidential?
Decisions, consent and withdrawal
- How much time do I have to decide?
- If I take time to decide, will that affect my care or outcomes?
- If I join this trial, will I miss out on other treatment or care opportunities?
- What happens if my situation changes – can I stay in the trial?
- Are there reasons I might need to stop participating?
- What happens if I decide to withdraw from the trial?
- Will my data or samples still be used if I leave?
After the clinical trial
- What will happen with the research results?
- How will I be told about them?
- Will I receive updates during the trial?
- Will I have follow-up care through the trial team?
- If the treatment or care works for me, will I still be able to get access to it after the trial ends?
Questions carers, family members or support people may want to ask
Carers, family members and friends often play an important role in supporting someone through a clinical trial. They may also have questions, such as:
- How can I best support the person taking part in the trial?
- What side effects or changes should I look out for?
- Who should I contact if I am concerned about them?
- What should I do in an emergency?
- Will I be involved in appointments or updates (if the patient agrees)?
- How might this trial affect day-to-day life for us (e.g. transport, time, care needs)?
- Are there support services available for carers or family members?
A final note
You are encouraged to ask questions at any stage – before you join, while you are participating, and after the trial. Your care team is there to support you, and you can revisit decisions as your situation or preferences change.
Taking part in a clinical trial is always your choice. It is okay to decide not to participate, and you can also choose to leave a trial after joining. Saying no to a trial will not affect the quality of care you receive now or in the future. Your healthcare team will continue to support you and discuss other treatment options that might be right for you.
You’re not expected to remember everything at once. Your care team can revisit information with you as needed.