The Marathon of Hope Cancer Centres Network’s Gold Cohort seeks to be Canada’s largest and most complete cancer case resource. It will include paired clinical and genomic data from a diverse pool of 15,000 Canadian cancer patients, with different cancers, treated across the country. This resource will provide a huge amount of data that will be crucial to better understand how precision oncology can be most effectively applied to patients.  

To create this resource, Network members first started working together to determine uniform ways to collect, share and analyze this patient data in ways that are scientifically rigorous and that protect the privacy of each patient involved. This essential groundwork is now allowing us to collect this data and start asking questions of it, such as what characteristics or genetic mutations make cancer patients more likely to respond to a certain drug. A handful of cases may not answer important questions like this one, but data from thousands of cancer patients will reveal key patterns. 

Some people have compared this to a pointillism painting: if you look up close at one dot, it may not look like anything, but if you zoom out and observe the collection of thousands and thousands of dots, you see the full picture. The Marathon of Hope Cancer Centres Network hopes to create that full picture through the creation of the massive dataset that will be the MOHCCN Gold Cohort and the additional data sharing it will catalyze. 

The guidelines, standards and policies directing this work are being created by more than a dozen Network working groups made up of experts from across the country. Strict ethical, legal, quality-control, and accessibility standards ensure that the data is scientifically useful and available for sanctioned research studies while also protecting the privacy of cancer patients. This all helps to make the Gold Cohort complete, accurate, permanent and accessible, meaning that researchers many years from now will still be able to use it to answer scientific questions that perhaps haven’t even been thought of yet. It also means that clinicians may, one day, be able to use artificial intelligence (AI) to match patients to personalized treatments based on how other patients with similar tumour characteristics responded to various treatments.  

While our first goal is to have the Gold Cohort reach 15,000 cases, it is the Network’s vision that this resource will continue growing, and that one day, data from every cancer patient treated in Canada will be added to it. The more cases are entered into the system, the more accurate precision oncology becomes. 

• Learn more about the Gold Cohort by clicking here or reading on below. 

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For a case to be included in the Gold Cohort, it must meet a set of minimum requirements laid out in the MOHCCN Gold Cohort Standards Policy. Currently, these requirements include both genomic and clinical data.  

A standardized set of more than 100 clinical data elements, including for example the patient’s cancer diagnosis and staging information as well as what treatment(s) they received and how they responded to it (them), must be available for each patient. All clinical information is de-identified, meaning that data that could be used to identify the patient is removed or modified to make the information anonymous. 

Genomic profiling of the cancer sample is also performed and must reach quality criteria. This includes profiling of DNA and, when possible, RNA extracted from tumour cells to provide a broad view of the cancer’s molecular characteristics. DNA from normal cells (usually obtained through a standard blood test) is also sequenced to help identify genetic changes that are specific to tumour cells versus those that are present in normal, non-cancerous cells (i.e. ‘germline’ alterations). Together, all of this profiling is known as whole-genome and transcriptome analysis (WGTA). 

In addition to WGTA data, other data can also be included for each case, where applicable. This can include, for example, imaging data or immune profiling data. The Network is also running a competition to see what other data points would help enhance the scientific impact of the Gold Cohort. 

This combination of clinical and genomic data is immensely valuable, as it allows researchers to link certain cancer behaviours, such as aggressiveness or response to treatment, to a tumour’s molecular features. This can in turn help predict how other cancers may progress or respond to various treatments. 

• Read the MOHCCN Gold Cohort Standards Policy

To populate the Gold Cohort, the Marathon of Hope Cancer Centres Network is funding more than 100 projects focused on data generation in over 30 partner institutions across Canada.  

These projects have been selected due to their ability to generate data according to the stringent legal, ethical and quality-control guidelines established by the Network and add both prospective (newly diagnosed) and retrospective (already diagnosed with samples available through a biobank) cases to the Gold Cohort.  Informed patient consent to their samples being used in a research setting is required for all cases. 

In practice, there are two main types of projects currently adding cases to the Gold Cohort: regional consortia projects and pan-Canadian projects. Regional consortia projects are approved at the consortium level (more on this below), while Pan-Canadian projects – which bring together researchers from across the country – were awarded after an expert review panel assessed applications submitted through a call for proposals.  

As we continue to implement our standards and build the infrastructure needed to collect, curate and share data across the country, it is the Network’s vision to expand beyond this current model, so that any patient across the country wanting to donate their data to the Network will be able to easily enroll in an MOHCCN-supported study to do so.  

• Learn more about Network-funded projects by clicking here.

The Marathon of Hope Cancer Centres Network is anchored by five regional consortia (a group of institutions from a particular region that have agreed to work together to achieve a common goal) representing all ten provinces. From west to east, these are: the BC Cancer Consortium (BC2C), the Prairies Cancer Consortium (PR2C), the Princess Margaret Cancer Consortium (PM2C), the Marathon of Hope - Québec (MOH-Q) consortium, and the Atlantic Cancer Consortium (ACC). Each consortium is composed of member sites and partnered with academic, research, and health institutions.  

Member institutions are those that signed the MOHCCN Network Master Agreement or a Joinder Agreement with the Terry Fox Research Institute. This is a pre-requirement to receive a grant for Network activities. Network Partners, on the other hand, participate or collaborate on certain Network activities and may have researchers associated with the Network, but are not Network Members. Partners may have an official agreement with a Network Member, but no official agreement with the Network itself. 

Individuals can also become Network members. This can be done through several avenues, such as leading or participating in a Network-funded project or a project contributing cases to the Gold Cohort, or being a member of one of the Network’s working groups. Network members therefore include researchers, clinicians, patients and caregivers, project managers, administrators, and more!  

Membership of the Marathon of Hope Cancer Centres Network in July 2024.