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MOHCCN Gold Cohort
Big Data: key to advancing cancer care through precision oncology
Cancer is a disease of the genome. It arises when healthy cells acquire genetic or epigenetic changes (mutations) that allow them to grow uncontrollably. Technological advances in the past several years have allowed researchers to observe cancer genomes in unprecedented detail, shedding light on the different kinds of mutations that can lead to cancer.
This has also revealed that cancers are each unique at the molecular and cellular level. These characteristics influence how each tumour progresses and responds to treatment. The recognition of this uniqueness has led to a new paradigm in cancer treatment known as precision oncology, which aims to deliver personalized treatment tailored to each patient’s individual characteristics. This new approach has the potential to improve outcomes while also reducing side-effects.
Although precision oncology holds great promise, it is still in its early days. Much work remains to be done to determine when and where this new framework is best deployed. To answer these questions, researchers need access to large amounts of high-quality, well-annotated data. Although an enormous amount of cancer-related data has been generated across the world, it has mostly come from siloed studies, making it difficult to study these data together in a standardized way.
Cancer is a disease of the genome. It arises when healthy cells acquire genetic or epigenetic changes (mutations) that allow them to grow uncontrollably.
The MOHCCN Gold Cohort – an ongoing effort
A key objective of the Marathon of Hope Cancer Centres Network is to build such a dataset. This will be a comprehensive resource of paired clinical and genomic data from a diverse pool of 15,000 Canadian cancer patients. We are calling this the MOHCCN Gold Cohort, and it promises to have few parallels in terms of its completeness and sophistication once complete.
To populate the Gold Cohort, the MOHCCN is funding data generation through five regional consortia and more than 30 partner institutions across Canada. Projects generate, collect and share data according to guidelines, standards, and policies created by eleven working groups made up of experts from across the country. These projects focus on a wide range of cancer types and scientific questions and will yield important insights into cancer biology and new treatment opportunities. In the longer term, the completed Gold Cohort dataset will be instrumental in accelerating precision oncology research and implementation in Canada.
Many of the projects generating Gold Cohort cases bring together multidisciplinary experts from across the country to strengthen ongoing research efforts. They are also helping to build capacity across Canadian hospitals and research institutions, bolstering research and healthcare efforts. Just as Terry Fox united and inspired Canadians, a central part of the MOHCCN’s vision is to bring together a ‘Team Canada of Cancer Research’.
The MOHCCN has eleven working groups made up of experts from different fields across Canada. Together, these groups create the guidelines, standards and policies needed to generate, collect and share data in a uniform way.
Gold Cohort case eligibility
For a case to be included in the cohort, it must meet certain requirements as laid out in the MOHCCN Gold Cohort Standards Policy. A standardized set of clinical data must be available. All clinical information is de-identified, meaning that data that could be used to identify the patient are 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 is also sequenced to help identify genetic changes that are specific to tumour cells and 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).
The Gold Cohort contains both prospective and retrospective cases. Prospective cases are selected by participating oncologists and are collected after study approval. Retrospective cases, on the other hand, are those where tumour material has already been collected or where WGTA has been performed that meets MOHCCN criteria. Appropriate patient consents are required for all cases. In general, high-quality data are more challenging to obtain from retrospective cases; therefore, the MOHCCN encourages prospective cases where possible.
An MOHCCN Gold Cohort case is considered complete when whole genome and transriptome analysis (WGTA) and clinical data are deposited into the MOHCCN.
Looking forward
Uniting cancer researchers, clinicians, administrators, and patients across the country to build a comprehensive and consistent cancer dataset is an ambitious task. It is also one that holds great potential to advance cancer research and care in Canada.
For this dataset to support the creation of inclusive and fair solutions that benefit all Canadians, it must be representative of the diverse Canadian population. To ensure this is the case, the MOHCCN is establishing key partnerships with institutions across the country, including those that serve rural and remote areas of the country.
The growing Network is rising to the challenge, coming together to develop national standards, share best practices, and accelerate the pace of data generation and sharing for the ultimate benefit of patients living with cancer.
You can track our progress in building the Gold Cohort and growing the Network by following our data dashboard, which is updated monthly, on our main page!