Biobank infrastructure is fundamental to advancing translational research, especially in rare diseases, as it provides ongoing access to biospecimens and associated clinical data. Across Canada, several biobank programs and projects exist with varying mandates and structures. These include both individual biobanks as well as biospecimen-intensive programs/projects such as ACCESS’ Driver Project, PRecision Oncology For Young peopLE (PROFYLE), the Marathon of Hope Cancer Centres Network, the cfDNA in Hereditary And High-Risk Malignancies (CHARM) consortium, and the SIGNATURE Project in Quebec.

Although the various biobanking and biospecimen-intensive projects across the country speak to the need for high-quality biospecimens for research, the fragmented landscape of Canadian pediatric biobanking has made it challenging for researchers to find, access, and share adequate numbers of these precious samples. This fragmentation hinders research progress, particularly for studies requiring large and diverse cohorts or access to rare samples. Issues surrounding broad consent, lack of process standardization, differences in clinical annotation, biobank visibility, adequate funding, trained staff, appropriate storage, and cumbersome material transfer agreements all contribute to the challenges faced by the biobanks and their prospective users.

This initiative aims to accelerate pediatric cancer research by transforming how biospecimens are securely accessed and shared, harmonizing biobanking and data sharing activities, reducing resource duplication and data fragmentation, ensuring equitable representation, and enabling new research avenues across areas such as translational and clinical research, public health, and policy. It is a critical step toward a more connected, collaborative, and impactful research ecosystem.

Key Activities:

• Establish a national, collaborative, and sustainable biobanking network that unites pediatric cancer centres, local biobanks, and biospecimen-intensive programs to:
  • Understand their current scope, governance, operational infrastructure and resources, and unmet needs; and
  • Identify gaps, overlaps, and synergies in the existing Canadian biobanking, and data sharing infrastructure.
• Implement a web-based common inventory search platform that captures and displays pediatric cancer biospecimens, and high-level de-identified clinical data, available across Canada.
• Develop resources such as cost recovery strategies; consent templates; standard operating procedures for biospecimen handling and storage; and guidelines to support the capturing of self-reported gender, race/ethnicity and Indigenous identities at the time of patient consent.

The data sharing activities within this initiative also directly support ACCESS’ strategic goal of building the necessary infrastructure to utilize big data and promote data sharing for all disease-specific research and collaborations.

For more information, please contact Tricia Schneider.