Taking part

Why?

Why do people take part?

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Possible benefits vs. possible risks

What to weigh up before participating

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Useful questions to ask

Find out more before committing yourself

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How do I find out if I can take part?

Screening explained

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Will I definitely get the trial treatment?

Will I know which treatment I get?

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Why?

Why do people participate in clinical trials?
As a healthy volunteer:
  • To help others and move medicine forward
  • There may be payment for participating
As a patient volunteer:
  • To help others
  • To increase the number of treatment options available to you, including the newer ones
  • To receive additional care and attention
Why would I be asked if I would like to participate in a clinical trial?

You may be asked to participate in a clinical trial if:

  • Connector.Connector.

    It has become available and could potentially offer new benefits to your current treatment

  • Connector.Connector.

    Your treatment options are limited

  • Connector.Connector.

    Your current treatment is not working and the next treatment option is palliative care


Possible benefits vs. possible risks

Although it is not guaranteed that the treatment being tested will work better than currently available treatment, there are some advantages of being in a trial that you might like to think about. In addition to the benefits, there are also risks associated with being in a clinical trial. The benefits and risks include:

Benefits Risks
You may be given a treatment that is safer or works better than current treatment options and which isn’t available elsewhere The new treatment may have unknown side effects or other risks, which may or may not be worse than those from existing treatments
You could be helping others who may have the same condition in the future by advancing knowledge in that condition/disease The treatment may not work for you, even though it works for others
You may increase the total number of therapeutic options available to you The treatment may not be as effective as current treatment options
You may feel like you have more choice over your situation and are taking a more active role in your health The impact it may have on your lifestyle, such as more frequent doctor visits and more tests, along with the need for more time and travel commitments
You could gain access to newer, more innovative treatments, the possibility of additional care/ attention and more careful monitoring of your condition by your healthcare team You may not be given the study treatment, as some trials such as randomised clinical trials(more details can be found here) are designed in a way where you may not have a choice about which treatment you are given. If the trial is blinded (more details can be found here), you (and maybe your doctor) will not be told which treatment you are getting

Useful questions to ask

If your doctor has suggested a clinical trial may be the next course of action for your treatment, or if you are thinking of taking part in a clinical trial as a healthy volunteer, you may find some of the questions listed below helpful to find out more about the trial and the treatment.

These types of questions will normally be included in the participant information sheet, which you will be given before joining a clinical trial.

Specific trial information
  • What is the purpose of the trial?
  • How will the trial help people in general and me in particular?
  • Who can take part in the trial? Why am I being asked?
  • What are the treatment choices in the trial?
  • Will I definitely get the treatment?
  • How long will the trial last?
What the trial involves
  • What will the trial involve?
  • If the trial is testing a drug how often must I take it, when and for how long?
  • What is already known about the potential side effects, risks and benefits of the drug being tested?
  • What will happen if I get side effects?
  • How often will I have to visit the clinic?
  • Will I have to have extra tests or scans?
  • Is there anything I am not allowed to do while I am taking part in the trial?
  • Who will have access to my data?
Other things you may like to know
  • What will happen when the trial is finished?
  • Will I be told about the results if I take part?
  • What if I later change my mind?
  • Who can I talk to if I have any more questions?
  • Will any reimbursement or compensation be available?
  • Will I be told what arm of the study I was in when the trial is finished?

Alternatively, you can download the questions as a PDF to print

In addition to the questions above it is also important to have a support network that you can rely on. Make sure you have friends, neighbours or family who know what you are doing and can help with any transport difficulties you may have, support you during any bad days, or even just be there to talk to.

How do I find out if I can take part in a trial?

After signing a document called an informed consent form (ICF), you will be asked to have a number of screening tests. These will determine whether it is safe for you to take part in the clinical trial and will be based on the particular requirements (eligibility criteria) of the clinical trial you are involved in.

The tests you may be asked to have could include a physical examination, an ECG (electrocardiogram), blood tests, CT/MRI (computed tomography/magnetic resonance imaging) scan or pregnancy test.

Please visit Explaining the jargon, for more information about the eligibility criteria and the type of tests you may be asked to have.


Will I definitely get the trial treatment?

The answer to this question is unfortunately, no. Due to the design and safety of many clinical trials, and the need for unbiased results, many participants are not given the experimental treatment. This is because of guidelines called eligibility criteria and a concept known as randomisation.

If you match the eligibility criteria for a trial, it is also important to note that there is the possibility of you being given a placebo. In addition, most clinical trials are blinded, this means you will not know that treatment you have been given.