The ACCESS Biobanking Network aims to address the current fragmented landscape in Canadian Child, Adolescent, and Young Adult (CAYA) biobanking, which makes it difficult for prospective researchers and biobank users to find and access high-quality biospecimens, particularly for very rare cancers or when highly restrictive criteria apply. This initiative aims to harmonize biobanking and material/data-sharing practices, improve biobank visibility, reduce resource duplication and siloing, share broad stakeholder-reviewed and approved Standard Operating Procedures (SOPs), and address challenges involving broad consent and funding shortages. The Network’s vision is to create a more connected and equitable research ecosystem that accelerates CAYA cancer research and enable new opportunities in translational and clinical research, public health, and policy.

The Biobanking Network has several in-progress key activities to address the gaps identified within the biobanking community:

• Growing and Expanding the Network

The ACCESS Biobanking Network continues to grow and expand its membership to establish a national, collaborative, and sustainable network. With over 60 members, Network members include researchers, biobankers, medical staff such as pathologists, biobank advocates, and Persons with Lived Experience (PWLE) who contribute their wide-ranging expertise from governance and operational infrastructures to ethical considerations and lived experience.

• Virtual Biobanking Platform

To help streamline access to biospecimens and clinical data and improve biobank visibility, the ACCESS Biobanking Network is developing a web-based common inventory database platform that captures and displays CAYA cancer biospecimens with high-level coded clinical data, available across Canada. Currently, the Network is working on transforming and mapping various field names and data structures used across multiple pilot biobanks’ databases to a common set of standardized fields. This allows data from numerous biobanks to be represented through a single, consistent virtual platform.

• Knowledge Mobilization Working Group

A Needs Assessment Survey was created to survey stakeholders to identify gaps within the biobanking community. One of the outcomes was the launch of the Knowledge Mobilization Working Group (KMb WG) – initiated to acknowledge some of the challenges and to promote biobanking awareness. The KMb WG is presently developing brochures and infographics intended to be shared nationally to patients and their families as well as medical teams.  The working group also intends to share biobanking awareness strategies and resources to further harmonize partners and stakeholders involved in CAYA cancer research.

• Standardizing and sharing SOPs

To further improve harmonization and to promote biobanking and sample and data sharing, the ACCESS Biobanking Network is committed to sharing standardized SOPs and resources to be available for use. The key initiatives listed aim to support this Network’s goal of harmonizing the Canadian CAYA biobanking landscape.

To join our Network or for more information on our initiatives, please contact Vi Nguyen or Emily Nakada.