Imagine a day when most cancer patients in Canada receive a tailored treatment based on the unique characteristics of their cancer. This idea – known as precision medicine – has the potential to improve survival and quality of life for our patients, and Canada is in a strong position to make it a reality.
To realise this, clinicians and researchers need access to large data sets – more than any single cancer centre in Canada can generate. These data will allow use of new technologies such as AI to pinpoint the vulnerabilities of each person’s cancer and to match them to new or existing treatments that selectively target them.
The Marathon of Hope Cancer Centres Network (MOHCCN) is creating this game-changing resource. Its Gold Cohort will be the largest and most complete cancer case resource in the country, made up of clinical and genomic data from 15,000 patients from diverse backgrounds, with different types of cancer, treated in health care centres across Canada.
This is an unprecedented endeavour, and the MOHCCN is using a unique approach to build it. To start, it’s uniting researchers, clinicians, patients and hospital leadership from across Canada to determine what types of data are needed and how they will be collected.
In parallel, the MOHCCN is creating a made-in-Canada technical tool to share this data in a novel federated system, meaning that the data can be queried by researchers and clinicians but never leaves the hospital where it was collected.
These two paths converge through the MOHCCN Pathfinder Project.
Launched in October 2021, this project is a collaboration with the Canadian Distributed Infrastructure for Genomics (CanDIG), a pan-Canadian initiative led by a data science team at the University Health Network in Toronto. Through it, the MOHCCN leveraged CanDIG’s presence in British Columbia, Ontario and Québec to create a customized software solution that helped test, refine and validate the Network’s data standards and policies, while also allowing clinical and genomic data from specific studies at participating centres to be deposited onto the platform.
This means that for the first time ever, MOHCCN researchers can see what data is in the Network and request access to it for their precision medicine studies.
“This is the first instance of a MOHCCN data-sharing Network,” says Dr. Karen Cranston, CanDIG’s team lead, adding that in the coming months, more data will be ingested as the project expands to sites in the Prairies and Atlantic Canada.
While tools still need to be added to analyze the data in ways that help cancer patients, the Pathfinder Project has set the stage for this to happen.
“What was previously a gravel road is now paved,” says Dr. Natalie Szudy, MOHCCN lead for the Pathfinder Project. “This project was all about setting up a data integration roadmap, helping validate our data models and creating the needed technical tools that we can deploy across the network. This work was a real success.”
The Terry Fox Research Institute is a Member of Research Canada: An Alliance for Health Discovery and Sponsor of Research Canada’s 18th Annual General Meeting: Fulfilling the Promise of Collaborative Advocacy Leadership. Visit rc-rc.ca to learn more.