National Biobanking & Data Sharing Platform

Principal investigator(s):

    Amjad Kayali, Nada Jabado and Philipp Lange

There has been a steep rise in the amount of ‘big’ health data being generated – including in cancer research, and this data is critical to the development of innovative therapies. However, Canada currently has no national infrastructure that allows this data to be used for pediatric cancer research, analysis, and innovation.

Similarly, the pediatric biobanking landscape across Canada is disconnected, often making it difficult for investigators to find, access, and share adequate numbers of rare pediatric samples for cancer research. Issues of broad consent, the standardized processing and storage of samples, biobank visibility, and inadequate resources – including funds, trained staff, and appropriate storage space, are only some of the issues faced by Canadian biobanks.

This project aims to standardize biobanking and data sharing activities, reduce resource duplication and data fragmentation, and accelerate research in a secure manner.

Key Activities :

  • Understand scope, policies, standard operating procedures, and collaborative opportunities for all existing biobanks (clinical and research), and data repositories.

  • Identify gaps, overlaps and synergies in the existing Canadian biobanking, and data sharing infrastructure.

  • Develop the infrastructure and execute a national biospecimen and secure data sharing strategy that ensures widespread access and accelerates pediatric cancer research.

The data sharing activities will support the ACCESS-wide 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 Emily Nakada.

Principal investigator(s):

    Amjad Kayali, Nada Jabado and Philipp Lange