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Ask your doctorTaking part in a clinical trial can be a good choice but it is often hard to find a clinical trial that is right for you. To find clinical trials:
  • Talk to your doctor who may have a clinical trial available at your hospital
  • Ask if there are other trials at nearby hospitals
  • Search for trials online
  • Contact the patient organisation in your country can be a great resource to direct you to clinical trials where available.
If you are considering taking part in a clinical trial, the doctor in charge will provide you with detailed information about the trial. This will include written information and a face-to-face meeting. You will also meet the study coordinator, often a senior nurse, who will also discuss the trial in detail. Carefully written information about the trial will also be provided. Take this away, read it carefully with your family members or supporters, and write down any questions you have about the trial to ask the doctor and study coordinator on the next occasion you meet them.
 
If you are thinking about taking part, please remember:
      • There is no promise that the clinical trial will be right for you; clinical trials are very stringently arranged and people can be excluded from joining a trial for seemingly trivial reasons.
      • The decision to take part in a clinical trial is entirely up to you. You should not feel pressured by your doctor or your family. Before joining, you should make sure that you understand the trial and that all of your questions have been answered.
      • Being diagnosed with cancer is a very stressful time and some people find the additional uncertainty of a clinical trial is too much to consider; they would prefer to take the best standard treatment that is currently available.
      • You can leave a clinical trial (“withdraw consent”) at any time during the trial without giving any reason for your decision.
      • You will not be penalised if you decide not to take part in a clinical trial, or decide to withdraw later.
 

To help you make your decision, here are 10 questions about clinical trials that you might want to ask your doctor.

  

Questions to ask about the trial

1. What is the aim of this trial?

a. How does the trial relate to my condition?
b. How might I benefit from the trial?
c. What are the pros and cons of taking part?

2. How much time and effort will be involved?
a. How many clinic visits and tests will there be?
b. Will I need to travel far?
c. Will I need a carer or partner to travel with me?
d. Will I have to pay for my travel or any other expenses?
e. How long will the trial last?
 
3. Will some patients receive a placebo?
a. If I am in the placebo group, will I be given the new treatment at the end of the trial?
(Note: kidney cancer trials rarely have a placebo group.)

4. What happens if I want to leave the trial before it ends?

Questions to ask about the new treatment

5. Has the new treatment been tested in any other trials?

a. What were the results?
b. What is known about the risks and side effects?
c. How is the new treatment given – is it a pill (how many?) or an injection (how often?)

6. How will I know if the treatment is working?
 
7. If the treatment works for me, can I continue to take it after the trial ends?

Questions to ask about your care

8. Who will be in charge of my care during the trial?

a. Who do I call in an emergency or if I have questions?

9. What will happen to my care after the trial ends?
a. What will happen to my care if the trial ends early for some reason?
 
10. What are my options other than this trial?
a. What treatment and care will I have if I decide to not take part?
b. Are there any other trials that might be better for me?

Questions other patients have asked

1. What is the new treatment? How does it work? Is it safe?

2. Why do you think it is better than the existing treatment?

3. Will the trial treatment help me? How will I know that it has worked?

4. Could it be worse than the standard treatment?

5. What are the side effects of the new treatment compared to the existing treatment?

6. Has it been tested in anyone else? Did it cause a lot of side-effects? Did it help anyone?

7. How will the new treatment be given? What will be involved? How often will I have to come to the hospital for tests and appointments?

8. What treatment would I take if I did not consent for the clinical trial?

9. What treatment could I take if the clinical trial treatment does not work for me? Can I change to the new treatment if I first have to take the old treatment and it doesn’t work?

10. Will I be notified of the results when the trial is finished and data is published?

11. If the trial requires tissue samples to be taken – what happens to this tissue? can anyone else access it ? Will it be available to anyone else when the trial ends?

12. Will anyone else have access to my data while I am on the trial or when the trial is finished? 

13. Is there any long term follow up and if so how is done?

14. Will the results of the trial be made publically available to anyone who wishes to see them – ie open publication?

15. Will I be allowed to continue with any supplements/ complementary treatments whilst taking part in the trial?

16. Will I be kept in a small cage? Do I have to run on the treadmill? Can I eat carrots instead of lettuce (I don’t like lettuce)? I’m going to be a guinea-pig in this trial?
OK, we admit that this last one is not a typical question, but a good reminder that patients are never guinea pigs in clinical trials!