Clinical trials in Canada
In May 2018, Ac2orn (Advocacy for Canadian Childhood Oncology Research Network) published the following information about Canadian specificities for chilhood, adolescent and young adult cancer. Please find their website here.
Approximately 90% of children who are diagnosed with cancer are cared for at a Children’s Oncology Group (COG) institution. They focus exclusively on the development of new treatments and ultimately cures for childhood cancer which is predominantly accomplished through the machinery of clinical trials.
Approximately 27.5% of children and adolescents (ages 0-14 years) are enrolled on a clinical trial at the time of diagnosis. Approximately 44% of children and adolescents (ages 0-14 years) follow a clinical trial protocol but are not registered on a clinical trial at the time of diagnosis. Often, if a clinical trial is not available at the time of diagnosis, patients will often follow the most successful phase 3 protocol but not be formally registered on the clinical trial. Approximately 70% of children and adolescents (ages 0-14 years) are enrolled on a clinical trial or follow a clinical trial protocol at the time of diagnosis. To compare, less than 4.5% of adults with cancer enroll on clinical trials in Canada.
Children with cancer enrolled on clinical trials tend to do better than those children who are treated with standard of care but not on clinical trials (also called an “inclusion benefit”). This “inclusion benefit” applies to children enrolled on any treatment arm of a clinical trial (control and intervention arms) versus those children who are not enrolled on a clinical trial. In the adult cancer world, this “inclusion benefit” also holds true. Children fair better when treated at a COG (Children's Oncology Group) affiliated hospital and this is especially true for adolescents and young adults with cancer. Overall, children receiving care at hospitals that run clinical trials have better outcomes.
COG has additional resources available for families and caregivers, including a mobile app called COG KidsCare. This app helps to keep track of important information while caring for a child with cancer, including relevant lab results, vital signs, notes to share with your provider at your next visit and more using the Journal feature. This app also includes the ability to track upcoming appointments, store relevant contact numbers under "My Team", as well as access to details and illustrations from the Children’s Oncology Group’s New Diagnosis Guide and Family Handbook. To personalize your profile, simply click on your corresponding hospital/treatment centre when setting up your account. The COG KidsCare app is available for download on the App Store and Google Play, or using the QR code below:
There are many reasons why a patient might not enroll on a clinical trial. These include:
- A clinical trial did not exist for the patient’s disease type at the time of need.
- A clinical trial was in the process of being approved by its research ethics board and had not been approved/opened when the patient needed the clinical trial.
- The patient’s treating institution did not activate an available clinical trial.
- The patient did not meet the clinical trial’s eligibility criteria.
- The patient enrolled on the clinical trial but was unable to continue on the trial due to various reasons (e.g., unable to harvest the necessary amount of stem cells, or the disease progressed)
- The patient was not offered an open clinical trial by their treating physician.
- The patient declined the clinical trial and/or further treatment.
The most common reason for not enrolling on a clinical trial at the time of diagnosis is that a clinical trial is not available. This is true for 68% of Canadian patients. The least common reason for not enrolling on a clinical trial is refusal by the patient/family.