Shaping Tomorrow's Treatments

Getting started

Getting Started as a Participant

Anyone can consider participating in a clinical trial. The type of clinical trial in which you can participate will depend on the phase of the trial and the kinds of participants needed to test a new treatment. Some trials require participants with a specific medical condition. Participation in these trials often requires referral from a doctor, while others require participants with no medical conditions. Learn more about the phases of a clinical trial, here:

Anyone can consider participating in a clinical trial. You can volunteer to participate in a clinical trial if you are healthy or if you have a medical condition.

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If you have a medical condition

And it is the illness or medical condition studied in the clinical trial, you may be eligible to participate.

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If you are healthy

You may be eligible to participate in a phase 1 study or as a control.

What to expect

For you to make the best decision about being in a clinical trial, you need to know as much as possible. Ask your healthcare or clinical trial team any and all questions you may have.

All clinical trials follow a process and are performed according to a protocol. You will:

  1. Find out about the clinical trial
  2. Meet with your doctor, healthcare and clinical trial team who will answer any questions
  3. Be provided with an informed consent form to read, understand and sign to learn the key facts about the clinical trial and what is involved if you decide to participate
  4. Determine if you can be in the clinical trial (a physical exam, lab tests, and scans might be done)
  5. Start the clinical trial when the study doctor confirms that you can participate, and you will and may undergo further examination, testing and scans, and,
  6. Complete the clinical trial (though some further follow up visits may be required).

You will not be asked to participate in a clinical trial unless your doctor, healthcare and clinical trial team think this is a good option for you to consider. The aim of clinical trials is for the benefits to be greater than the risks. By participating in a clinical trial, you may be:

  • one of the first patients to receive a life-changing treatment
  • helping future generations of patients
  • part of helping researchers better understand an illness.

When you participate in a clinical trial you are closely watched by the clinical trial team to make sure that any side effects are carefully monitored and managed, that the treatment is given the right way, and that you do your part to follow the protocol.

Here’s who you might meet

There are a lot of people who are needed to run a clinical trial. They make sure everything goes according to plan and carefully monitor all participants. The people listed below will often be involved in clinical trials. A brief explanation of each person’s role is given.

Participant A clinical trial simply isn’t possible without the generosity of the people who volunteer to participate.

Principal Investigator (PI) – The PI supervises the clinical trial across all the sites that are part of the clinical trial. This person is highly qualified (often a medical doctor or a dentist) with additional training in the area of clinical trials.

Clinical Research Coordinator – You will likely have the most contact with one or more coordinators. Coordinators ensure that participants understand how the study works and are often responsible for supporting them through a variety of activities – from completing the informed consent form to filling out trial questionnaires and studies. Coordinators may also make sure trial visits, tests and procedures are scheduled on time. They can also provide education about the clinical trial to staff and healthcare providers who may refer patients to the study.

Other Members of the Clinical Trial Team – This might include patient partners, physician assistants, physiotherapists, nurses, pharmacists, psychologists, social workers, and any other healthcare professional that might need to help care for participants throughout a clinical trial.

Sponsor The person, company or organization that starts and manages a clinical trial, and if required, applies for permission (e.g., from Health Canada) to conduct the trial. The sponsor may or may not provide financing for the clinical trial.

Research Ethics Board (REB) The REB is an independent group that reviews the ethics (the right and wrong) of a clinical trial and ensures that participants in the clinical trial are protected.

There can be risks and demands in a clinical trial, and below are some things you need to consider

Uncertain benefits

The treatment may not have an effect or work no better than your current treatment.

Side effects

These may range from minor and unpleasant to serious and even life threatening.

Treatment changes

You may or may not be able to continue your current treatment during the clinical trial.

Commitment

You may need to go to several appointments, have more tests, or keep a daily clinical trial diary.

It’s up to you

Participating in a clinical trial is voluntary and completely up to you. When you are invited to participate (and even after you have started the clinical trial) you have the right to:

  • decide if you wish to take part or continue to take part in the clinical trial or not
  • withdraw at any time for any reason without having to provide a reason and without this affecting your medical care
  • confidentiality of your information, as any information about you or your health that is collected will be protected. It’s the law – even after you have completed or left the clinical trial.

When you are considering participation in a clinical trial, here are some questions you may wish to ask your healthcare or clinical trial team:

  • What is the purpose of the study?
  • What is the phase of the study?
  • Who is going to be in the study?
  • Will being in a clinical trial affect my medical care?
  • Why do researchers believe the new treatment being tested may be effective? Has it been tested before? How is the treatment different from the current therapies or standard of care?
  • What kinds of tests and treatments are involved?
  • What are the requirements to be part of the study? Do I qualify? What sort of tests will be done to determine if I qualify for the study?
  • What are the possible risks, side effects, and benefits of the study?
  • How will this affect my daily life?
  • How long will the clinical trial last?
  • Will I need to be in the hospital? Will the study be an in-patient or out-patient study?
  • What is the treatment schedule?
  • Who will pay for the treatment?
  • Will I be reimbursed for other expenses (for example, if I have to drive and pay for parking)?
  • How will I know that the treatment is working?
  • What happens when the clinical trial ends?
  • Will I find out the results of the clinical trial?
  • Will I be able to use the new treatment when the study is finished?
  • Will I be able to find out the results of the study?
  • Who can I talk to about the clinical trial?
  • Who can I talk to if I have any concerns about my treatment?
  • Will participating in this clinical trial prevent me from participating in other clinical trials in the future?

Download these questions here.

Find a clinical trial

Here are some trustworthy resources to help you find a clinical trial.

Canadian Resources:

  • Clinical Trials Nav.
  • The Canadian Cancer Trial Finder Contains all trials for active solid tumors and hematologic malignancies.
  • The Canadian Precision Oncology Trial Finder Allows use of individual diagnostic information from a patient’s tumor or biological sample to search for trials focusing on unique biomarkers—genes, proteins, or other substances that can signal the presence of cancer, or target mutations that control cancer cell growth and survival.
  • bethecure.ca This is the homepage for a website to search for clinical trials in Alberta.
  • Canadian Cancer Trials This is the homepage for a site created by the Canadian Partnership Against Cancer, allowing you to search for a cancer clinical trial anywhere in Canada.
  • Clinical Trials Ontario’s Clinical Trials Finder This is the homepage to search for a clinical trial anywhere in Canada. The site is hosted by Clinical Trials Ontario and searches clinicaltrials.gov, providing fewer and simpler search features to make it easier to use.
  • Health Canada’s clinical trials database This landing page allows you to search for phase 1, 2, and 3 clinical trials in Canada involving pharmaceutical and biological drugs. For more information, speak to your physician and/or contact the clinical trial sponsor listed.
  • OncoQuébec Allows a search of clinical trials in oncology by keyword(s) or filter(s). The platform contains studies currently recruiting participants in Quebec, and those that will soon be. It also allows you to contact research teams directly. (Available in French and English)
  • Reach BC The homepage of a BC initiative to connect volunteers who would like to participate in clinical trials and studies with researchers, or to learn more about research opportunities in BC.
  • Research opportunities in New Brunswick
    • A Cure is on the Horizon A research registry that allows people interested in participating in research to provide information about types of research they are interested in. Their information is kept on file, and when a potential matching research opportunity comes up, they are contacted.
    • Find a Clinical Trial at Horizon (page under construction / coming soon). This resource will allow you to search studies that are currently open to participants.

International Resources:

  • ClinicalTrials.gov Homepage of the US National Institutes of Health clinical trial database, allowing searches of privately and publicly funded clinical studies around the world.
  • International Standard Randomised Controlled Trial Number (ISRCTN) A searchable clinical trial registry recognized by the World Health Organization (WHO) and the International Committee of Medical Journal Editors (ICMJE). Clinical research studies (whether proposed, ongoing, or finished) anywhere in the world are included.
  • World Health Organization Clinical Trials Search Portal WHO’s homepage for looking up clinical trials anywhere in the world. If the same trial is listed in more than one place, results are grouped together.

You may also find out more about how to be in a clinical trial by asking your doctor or another member of your healthcare team.

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