2023 ACMG Annual Clinical Genetics Meeting Digital Edition: Poster Gallery-Creation of the Ontario Hereditary Cancer Research Network (OHCRN)

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The Ontario Hereditary Cancer Research Network (OHCRN) is being developed as a centralized online registry in Ontario, Canada, to capture patient clinical and genomic information related to hereditary cancer syndromes. OHCRN aims to synergize existing hereditary cancer registries and expand its scope to include additional syndromes. The network's governance structure is led by the Ontario Institute for Cancer Research.<br /><br />OHCRN seeks to address the fragmented care and limited access to research and clinical trials for patients with hereditary cancer syndromes in Ontario. To update the healthcare system, Ontario Health has harmonized germline genetic testing for hereditary cancer, presenting an opportunity to centralize germline genomic data.<br /><br />The proposed changes for hereditary cancer research in Ontario include facilitating patient enrollment through clinician referral or self-identification. OHCRN will collaborate with provincial health administration to link genomic information with administrative health data. Phase 2 of OHCRN will focus on expanding access to patient biospecimens, enhancing connections with genetics labs, and facilitating data linkage across Ontario to enable the correlation of genomic and clinical information. This longitudinal approach has the potential to improve clinical care.<br /><br />The results of OHCRN's initial phase include the development of a data model and dictionary, data de-identification and re-identification methods, and administrative tools. The network will have multiple levels of consent and data access for research studies. The OHCRN community includes stakeholders from various domains, such as scientists, researchers, clinicians, genetic counselors, molecular laboratories, genetics clinics, and patient advocates.<br /><br />The OHCRN Steering Committee, as well as subcommittees for data management, laboratory, and research ethics, will oversee the network's operations. The network aims to engage the hereditary cancer syndrome community and develop a comprehensive database for surveillance and gene discovery. OHCRN also plans to release and update clinical and genetic health data, provide access to archival biospecimens, and facilitate re-contact for future studies. A public portal and approved researcher portal will enable data aggregation and analysis, while patients will have access to their own data and clinical trial information.

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Presenting Author - Lauren K. Hughes, MS, CGC; Co-Author - Kirsten M. Farncombe, PhD; Co-Author - Michelle D. Brazas, PhD; Co-Author - Melyssa Aronson, CGC; Co-Author - Kathleen Bell, MSc, CGC; Co-Author - Brandon Chan, B.A.Sc.; Co-Author - Andrea Eisen, MD; Co-Author - Harriet E. Feilotter, PhD; Co-Author - Bailey Gallinger, MSc, CGC; Co-Author - Jordan Lerner-Ellis, PhD; Co-Author - David Malkin, MD; Co-Author - Ellen MacDougall, MSc; Co-Author - Steven A. Narod, MD; Co-Author - Karen Panabaker, MSc, CGC, CCGC; Co-Author - Trevor J. Pugh, PhD; Co-Author - Sarah L. Sawyer, MD/PhD; Co-Author - Alison Rusnak, MD; Co-Author - Andrea K. Vaags, PhD; Co-Author - Laszlo Radvanyi, PhD; Co-Author - Lincoln D. Stein, MD/PhD; Co-Author - Raymond H. Kim, MD/PhD;

Meta Tag

Cancer Syndromes

Databases

Co-Author Kirsten M. Farncombe, PhD

Co-Author Michelle D. Brazas, PhD

Co-Author Melyssa Aronson, CGC

Co-Author Kathleen Bell, MSc, CGC

Co-Author Brandon Chan, B.A.Sc.

Co-Author Andrea Eisen, MD

Co-Author Harriet E. Feilotter, PhD

Co-Author Bailey Gallinger, MSc, CGC

Co-Author Jordan Lerner-Ellis, PhD

Co-Author David Malkin, MD

Co-Author Ellen MacDougall, MSc

Co-Author Steven A. Narod, MD

Co-Author Karen Panabaker, MSc, CGC, CCGC

Co-Author Trevor J. Pugh, PhD

Co-Author Sarah L. Sawyer, MD/PhD

Co-Author Alison Rusnak, MD

Co-Author Andrea K. Vaags, PhD

Co-Author Laszlo Radvanyi, PhD

Co-Author Lincoln D. Stein, MD/PhD

Co-Author Raymond H. Kim, MD/PhD

Presenting Author Lauren K. Hughes, MS, CGC

Keywords

Ontario Hereditary Cancer Research Network

online registry

patient clinical information

genomic information

hereditary cancer syndromes

governance structure

Ontario Institute for Cancer Research

fragmented care

limited access

research and clinical trials