The document summarizes information about the Canadian Open Genetics Repository (COGR), which serves as the HVP Country Node for Canada. It provides details on clinical genetics resources in Canada, the structure and funding of COGR, its data sharing policies and technical capabilities. COGR's data holdings have doubled in the past year and it plans to strengthen genomic data sharing by publishing findings and seeking additional funding. The primary challenges are obtaining funding and data from all sites.

1. SESSION VI
HVP Country Nodes
Thursday 2nd June
Canada
Dr. Matthew Lebo
The Canadian Open Genetics Repository (COGR)

2. Canada: a snapshot
• Clinical laboratories: 25-30
• Clinical Geneticists: 120 (members of CCMG)
• Genetic Counselors: 300 (CAGC certified)
• Genetic testing & genetic healthcare services: Publically -
Ministries of Health for each province
• National Human Genetics Society: Canadian College of
Medical Geneticists (CCMG), Dr. Gail Graham, June 19th-21st,
2016

3. HVP Country Node: Canadian Open
Genetics Repository
• Year established: 2013
• Structure: Steering committee
• Funding: Genome Canada and the Ontario Genomics
Institution
• Links with NHGS: Letter of support and members of CCMG
within COGR
• Ethical framework, privacy, consent:
– FDA registered platform (GeneInsight)
– Only sharing variant level data therefor privacy consent concerns
mitigated

4. HVP Country Node: Technical
• National data repository: opengenetics.ca
• Data available nationally: Local instances on platform
• Data available internationally: Anticipating release of public
variant database end of Summer 2016
• Available:
– Data Collection Policy:
http://opengenetics.ca/communities/policiesguidelines/
– Collection Agreement: Same as above
– Data Access Policy: Same as above
– Data Ownership Policy: Same as above

5. Progress, Plans and Problems
• Progress in the past 12 months:
– Doubled variant data holding
– 11/23 institutions actively sharing data
– Developed curation process and tools
– First release of discrepancy reports (BRCA1/2 focused) in Winter 2016
• Plan for the next 12 months:
– Publication on first discrepancy report release
– Quarterly release of discrepancy reports
– Prolong funding past 4th year
– Stronger links to other genomic sharing efforts
• Problems/barriers we face:
– Funding
– Obtaining data and enabling sharing from sites