Clinical trial enrollment of children with cancer in Canada

On this page

• Context
• About the data
• Resources

Context

Childhood cancer in Canada

Each year in Canada, almost 1,000 children under 15 years are diagnosed with cancer (Cancer in Young People in Canada Data Tool). Despite being the second leading cause of death among children aged 1 to 14 (Statistics Canada), the five-year survival rate has now surpassed 86% (Cancer in Young People in Canada Data Tool). Improvements in survival can largely be attributed to scientific progress and advancements in treatment discovered through clinical trials (O’Leary et al., 2008; Pritchard-Jones et al., 2008).

What are clinical trials?

Therapeutic clinical trials are research studies that evaluate the safety and/or efficacy of one or more interventions (Canadian Institutes for Health Research). Clinical trials aim to improve survival or reduce side effects of treatment (Children's Oncology Group).

Children enrolled in a clinical trial may be assigned to a control group and receive the standard of care. Or, children are assigned to the experimental group and receive a new therapy. Patients and their families work carefully with their care team to determine if a trial should be considered (Sick Kids) and the risks and benefits must be weighed before enrolling (Canadian Cancer Society; Health Canada).

Clinical trial enrollment for children

Several conditions need to be met for a child to enroll in a trial:

• Eligibility: Each trial has inclusion criteria based on factors such as cancer type and stage. Some trials are for newly diagnosed children, while others are for those with advanced or relapsed cancer (U-Link Canada).
• Trial Availability: The trial must be open and approved for the child’s diagnosis when needed. Further, the child’s treatment centre must activate the trial and offer it (U-Link Canada). If unavailable locally, travel to another centre may be an option.
• Consent Process: Children capable of understanding treatment decisions can give consent, those who are partially capable give assent, and parents or guardians provide permission when needed (Canadian Cancer Society).

Research suggests that lack of trial availability contributes to low enrollment (Pole et al., 2017). Many collaborative group clinical trials are conducted internationally, which can sometimes delay or restrict access for patients in Canada. The reasons impacting enrollment are complex and beyond the scope of this interactive report. For information on improving access to clinical trials for children with cancer in Canada, see the provided resources.

About the interactive report

This interactive report aims to describe the characteristics of children in Canada enrolled in therapeutic clinical trials for their initial treatment of cancer. Rounded statistics are presented for 4 different groups of pediatric cancer: leukemia, lymphoma, central nervous system (CNS) tumours, and non-CNS solid tumours.

About the data

The Cancer in Young People in Canada (CYP-C) program is a national, population-based surveillance system of all children and youth diagnosed with cancer in Canada. CYP-C collects information on children and youth with cancer including treatments, complications, and outcomes. The CYP-C surveillance system operates through a collaboration between the Public Health Agency of Canada, the Canadian Partnership Against Cancer, and the C17 Council, a network of all sixteen pediatric hematology, oncology, and stem cell transplant programs across the country.

Refer to the Technical Notes for more information.

Resources

Improving access to clinical trials

In Canada, several initiatives aim to improve access to clinical trials for children and youth with cancer and strengthen the clinical trials ecosystem. Examples include:

• In 2023, the Government of Canada announced an investment of $23 million to advance research in pediatric cancer care. This led to the formation of the national research network Advancing Childhood Cancer Experience, Science & Survivorship (ACCESS). One of the aims of ACCESS is to establish a national clinical trials infrastructure and develop remote access pathways to trials to support Canadian-led trials and improve pan-Canadian trial availability.
• Launched in 2022, U-Link.care aims to inform childhood cancer health professionals, patients, and families about available clinical trials within Canada, as well as closed clinical trials and their results. U-Link also maintains a list of charities and funds that provide financial help to families with children with cancer. The U-Link Patient and Family Fund also assists families with support for travel and accommodation costs when accessing clinical trials outside of their local treatment centre.
• In 2021, the Canadian Cancer Clinical Trials Network (3CTN) developed and published the Canadian Remote Access Framework for Clinical Trials (CRAFT). This framework helps enable clinical trial participation for patients who live far from the healthcare site where the trial is primarily offered.
• In 2019, the Canadian Partnership Against Cancer (CPAC) published the updated Canadian Strategy for Cancer Control 2019-2029. The Strategy calls for the adoption of innovations and enablers that allow cancer care to be provided closer to home, including the option to participate in clinical trials. The Strategy also calls for provinces and territories to work together to make highly specialized treatment accessible to all people across the country. The Strategy calls for an improved understanding of the barriers in the current clinical trial system so that trials can be more inclusive, with faster and better enrollment processes.
• The Canadian Collaboration for Child Health: Efficiency and Excellence in the Ethics Review of Research (CHEER) is an initiative that aims to improve child health by streamlining research ethics review for child health research to enable more efficient multi-site clinical trials.
• The C¹⁷ Council’s Developmental Therapeutics Committee provides greater access across Canada to Phase I/II trials; allowing children and their families an option for investigational treatments while staying closer to home.
• The Pediatric Cancer Models and Mechanisms (PCMM) network is a national initiative to catalyze connections between researchers across the pre-clinical spectrum to drive biology-informed early phase clinical trials in pediatric hematology and oncology. Collaborations can expedite the understanding of diseases and enable the design of new therapies to the ultimate benefit of those affected by pediatric cancer and blood disorders.
• Health Canada is committed to modernizing the clinical trials framework. The Forward Regulatory Plan for 2024-2026 outlines the proposed amendments. The modernization intends to offer greater flexibility in the safe development of innovative therapies and streamline processes to achieve greater efficiency and clarity. In addition, Health Canada’s Clinical Trials Database provides a source of information about Canadian clinical trials involving human pharmaceutical and biological drugs. Patients can access the database to determine if a clinical trial has met the regulatory requirements.
• N2 (the Network of Networks) is a not-for-profit association of Canadian research networks and organizations working to advance Canada’s clinical research skills and capacity. They bring together people who do clinical research and clinical trials so that they can share resources, best practices, and information. They worked closely with patients and caregivers to create the It Starts With Me website, which spreads the word about the impact of clinical trials.
• The Canadian Institutes of Health Research (CIHR) is strengthening the clinical trials ecosystem to improve health care and health outcomes for all Canadians. By investing in key initiatives such as the Clinical Trials Fund and the SPOR innovative Clinical Trials (iCT) Initiative, CIHR is accelerating the development and implementation of the best methods in clinical trials to ensure Canada is prepared to face health challenges.

Suggested Citation

Centre for Surveillance and Applied Research, Public Health Agency of Canada. Clinical Trial Enrollment of Children with Cancer in Canada. Health Infobase. Ottawa (ON): Public Health Agency of Canada, 2025.