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Policies and Guidelines
The goal of the Marathon of Hope Cancer Centre Network (MOHCCN) is to accelerate the adoption of Precision Medicine for cancer patients through the creation of a pan-Canadian Network of designated Cancer Centres. The Network supports the unification of top-tier cancer researchers and clinicians and the sharing of data, the development and validation of exciting new technologies and the delivery of the best outcomes for every cancer patient in Canada, no matter where they live.
Supported by MOHCCN Committees and Working Groups, the development of MOHCCN policies and guidelines are key components required for the development and responsible sharing of Network data.
Clinical Data Model
The Clinical Data Standards Sub-Committee (CDS) has been set up as a sub-committee of the Data Policies and Standards Committee. The goal of the CDS is to support the harmonization of data across cohorts and the promotion of uniform analysis.
| Clinical Data Model v3.1 | The most recent version of the MOHCCN Clinical Data Model. (Version 3.1 as of September 2024.) | |
| Clinical Data Model v3.1 Guidelines | The guidelines provide support and explanation to data curators for the MOHCCN Clinical Data Model v3.1. | |
| Clinical Data Model v3.1 Release Notes | The release notes outline changes between the previous version and the current version of the MOHCCN Clinical Data Model. | |
| ER Diagram | View the ER Diagram for MOHCCN Clinical Data Model fields. | |
| REDcap Template Resource | A template resource for those who are using or wish to use REDcap as their electronic data capture system, provided by Princess Margaret Cancer Centre. COMING SOON. | |
| ATiM Template Resource | A template resource for those who are using or wish to use ATiM as their electronic data capture system, provided by MOH-Q. COMING SOON. |
Data Access and Use Policy
The MOHCCN Data Access and Use Policy defines the procedures and timelines for access to and use of data shared with the Network in research endeavors. The Policy aims to expedite data access to the Network. Network Data includes all data that is generated with the use of MOHCCN funding and made available by the Network and its Partners. Network Data may include genomic and other molecular data types, along with clinical and other health-related information.
Version: 1
Developed by: Data Policy and Standards Committee (DPSC)
Data Access Procedures
The Data Access Procedures are to ensure data access is provided in a timely manner in compliance with Network agreements and policies.
Version: 1
Developed by: Data Policy and Standards Committee (DPSC)
Data Privacy Policy
The MOHCCN recognizes the importance of protecting the privacy of research participants contributing to the MOHCCN Gold Cohort. The MOHCCN Data Privacy Policy describes privacy safeguards for controlled access data and identifies individual participant-level data to be made available through controlled access.
Version: 1
Developed by: Data Policy and Standards Committee (DPSC)
FF Tissue Preparation and Nucleic Acid Isolation Guideline
Tissue preparation and nucleic acid isolation from fresh frozen (FF) tissue is comprised of a series of activities from the selection and preparation of tissue to the qualification of DNA and RNA ahead of library preparation. To support harmonization of processes across Network centres, this guideline advises on all the processes related to these activities.
Version: 1
Developed by: Biospecimens Working Group (BWG)
FFPE Tissue Preparation and Nucleic Acid Isolation Guideline
Tissue preparation and nucleic acid isolation from formalin fixed paraffin embedded (FFPE) tissue is comprised of a series of activities from the selection and preparation of tissue to the qualification of DNA and RNA ahead of library preparation. To support harmonization of processes across Network centres, this guideline advises on all the processes related to these activities.
Version: 1.1
Developed by: Biospecimens Working Group (BWG)
"Gold Cohort" Standards Policy
The MOHCCN aims to create a “Gold Cohort” of clinical cancer specimens with a well-annotated, uniformly generated, and consistently quality-controlled dataset (clinical and genomic) from 15,000 (15k) cases collected from across Canada over 5 years. This policy defines the data requirements to complete a MOHCCN Gold Standard Case. Additional guidelines support the collection of data around each case.
Version: 1.2
Developed by: Technology Working Group (TWG) and Data Policy and Standards Committee (DPSC)
Patient Consent Form Template and Checklist
With a diverse set of cohorts contributing data to the MOHCCN, a Patient Consent Form Template and Checklist aid in ensuring appropriate terms and conditions are included in patient consent forms and are in compliance with Network agreements. The template can be used as a starting point for new prospective cohorts or to check against consent forms collected by retrospective and ongoing cohorts. The checklist provides information and to guide eligibility of study cohorts.
Version: 1
Developed by: Patients Working Group and Return of Results Subgroup
| Patient Consent Form Template | Here you can download the form template. | |
| Patient Consent Checklist | Here you can download the checklist. | |
Publication Policy
The MOHCCN Publication Policy establishes a definition of a MOHCCN Network publication. It includes guidelines for authorship and acknowledgement components. The Policy contains an outline of the requirements for publications authored by members of the Network using Network data.
Version: 1.1
Quality Control Gates Guideline
The Quality Control (QC) Gates Guideline supports the development of the MOHCCN Gold Cohort. It provides guidance on standard quality control gates for WGTS sequencing across the Network. The guideline aims to assist in minimizing case failures.
Version: 1
Developed by: Technology Working Group (TWG)
Researcher Code of Conduct
Key to the success of the Network are the shared values, principles and practices of the Marathon of Hope Research Community that are embedded in the MOHCCN Researcher Code of Conduct and apply both to individual community members and their host institutions. These shared values, principles and practices guide the expectations of those that are using MOHCCN data to further the adoption of precision medicine in Canada.
Version: 1
Developed by: Data Policy and Standards Committee (DPSC)
Underserved and Underrepresented Populations Guideline
To help increase inclusion of underserved and underrepresented populations in MOHCCN research and create datasets that are representative of all Canadian populations, this guideline defines populations that are considered underserved and/or underrepresented for the purposes of Network activities.
Version: 1
Developed by: Canadian Spectrum Working Group (CSWG)
Whole Genome and Transcriptome Sequencing Guideline
The MOHCCN aims to create a “Gold Cohort” of clinical cancer specimens with a well-annotated, uniformly generated, and consistently quality-controlled dataset (clinical and genomic) from 15,000 (15k) cases collected from across Canada over 5 years. This guideline provides recommendations for the generation of the Whole Genome and Transcriptome Sequencing (WGTS) data to the “gold standard”.
Version: 1
Developed by: Technology Working Group (TWG)
Change Request/Additional Information Submission Form
Researchers are able to use the following form to submit questions about MOHCCN data standards and guidelines and to request a change to the MOHCCN Clinical Data Model.
