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Observational Study
. 2024 Nov 24;14(11):e087023.
doi: 10.1136/bmjopen-2024-087023.

Development of the Ontario Hereditary Cancer Research Network, a unified registry as a resource for individuals with inherited cancer syndromes: an observational registry creation protocol

Kirsten M Farncombe  1   2 , Lauren K Hughes  2 , Elif Tuzlali  2 , Mohammad Reza Akbari  3   4 , Irene L Andrulis  5   6 , Melyssa Aronson  7 , Kathleen Bell  8 , Michelle D Brazas  2 , Melissa Cable-Cibula  2 , Brandon Chan  2 , Melanie Courtot  2 , Harriet Feilotter  2   9   10 , Jamie Harland  2 , Katie Lark  2 , Jordan Lerner-Ellis  11   12 , Ellen MacDougall  3 , David Malkin  13   14 , Steven A Narod  3   4 , Karen Panabaker  15 , Laszlo Radvanyi  2 , Alison Rusnak  16   17   18 , Lincoln Stein  2 , Raymond H Kim  19   4   5   7   8   20   21   22 ; OHCRN community
Collaborators, Affiliations
Observational Study

Development of the Ontario Hereditary Cancer Research Network, a unified registry as a resource for individuals with inherited cancer syndromes: an observational registry creation protocol

Kirsten M Farncombe et al. BMJ Open. .

Abstract

Introduction: In Canada, care for individuals with hereditary cancer is fragmented across the provinces and territories, with carriers of pathogenic variants in cancer-susceptibility genes seeing multiple doctors and often advocating for their own management plans. The need for a national registry of carriers has been well established. While other cancer consortia exist, barriers in clinical and genomic data sharing limit the utility of the information gathered.

Methods and analysis: Within the province of Ontario, the Ontario Hereditary Cancer Research Network (OHCRN), funded by and located at the Ontario Institute for Cancer Research, is being developed to fill this gap. The registry will hold clinical, genomic and self-reported data from consented carriers and will make this data available to qualified researchers in anonymised and aggregated form. Individuals must agree to certain components to participate in OHCRN; there are also optional consents participants can agree to without impacting their involvement in OHCRN. We plan to open the registry for participant enrolment in mid-2025.

Ethics and dissemination: Ethics approval for registry creation was obtained from the Ontario Cancer Research Ethics Board, a centralised body that streamlines reviews for cancer research studies in Ontario. Registry data will be disseminated to participants and researchers as aggregate data through the OHCRN website and presented at scientific conferences, made available to Ontario Health (Cancer Care Ontario) to inform policy and evidence-based practice, as well as be available to the scientific community for further analysis and answering relevant questions.

Keywords: Cancer genetics; Health Services Accessibility; ONCOLOGY; REGISTRIES.

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Conflict of interest statement

Competing interests: None declared.

Figures

Figure 1
Figure 1. Various workflows for participant enrolment into the OHCRN registry through the participant portal. OHCRN, Ontario Hereditary Cancer Research Network.
See this image and copyright information in PMC

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