Plans for implementation of the new pan-Canadian network to accelerate precision medicine continue to move ahead with partners and leaders from the founding MOH Network Council meeting virtually with regional working group leads last month. Approximately 35 participants from partner institutions in BC, Ontario and Quebec attended along with staff and leadership from TFRI.
The groups have been meeting regularly and the main purpose of this meeting was to identify what needs to be done to start accruing the 15,000 fully annotated cancer cases (also known as the "15K gold cohort") and follow their precision medicine treatments to build a knowledge and learning platform for cancer.
Following is a brief update on the working groups progress to date.
Platform design and DHDP — An overview of progress for the design phase of the federated system was presented by Sean Davidson who described how data needs to flow from source systems to the DHDP appliances. Notably an integration group has been created with technical representation from founding centres. There are many questions and issues still to address around data governance, security, sharing, privacy and traceability from the perspective of a federated system.
Scientific cohort selection — Presenters Drs. Lilian Siu, Francois Bernard and John Stagg provided a list of case studies they have selected for the first 1500 cases towards the 15K gold cohort. In all they have over 15K cases to contribute. For the first-year data collection each consortium will identIfy 500 cases they believe are gold cohort ready.
Data— Dr Lincoln Stein gave an overview of the data working group and its key recommendations for scope of sharing, alignment with international genomic standards as well as results of a survey of mandatory clinical and specimen fields resulting in a total of 85 identified mandatory fields required. The field list will be reviewed and a check for privacy will be undertaken to determine whether fields are identifiable.
Patients— Drs. George Zogopolous and Janessa Laskin presented an updated MOH consent template for new cohorts and a recommended checklist of items to be considered for existing studies. The template will be subject to adjustments required by individual REBs.
Technology platforms — Dr. Trevor Pugh spoke about the various technology platforms and the need to focus on the acquisition of technology and discounts that are beneficial given that the cohorts will require different assays. Discussions with vendors are proceeding with the goal of securing best prices and quality that is best suitable for the network.
Health technology assessment (HTA) — This group is focused on providing the evidence required to support the provision of precision medicine to patients in terms of effectiveness and value in rare diseases. The team has generated a list of 83 individual data elements that they hope to collect and analyze, reported Dr. Dean Regier. The HTA and Data working groups plan to share fields to identify areas of overlap.
Leadership recruitment plans — Plans are underway to recruit new hires for key positions, said TFRI COO Stephen Herst. These positions are: Executive Director Marathon of Hope, Executive Director Digital Health and Discovery Platform and Chief Data Officer.
TFRI president Dr. Victor Ling commended the groups for their comprehensive work and thanked them for working together to move the network forward and to manage the complexities and intricacies involved in setting up this novel network.