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.

Autor:	Farncombe KM; Toronto General Hospital Research Institute, University Health Network, Toronto, Ontario, Canada.; Ontario Institute for Cancer Research, Toronto, Ontario, Canada., Hughes LK; Ontario Institute for Cancer Research, Toronto, Ontario, Canada., Tuzlali E; Ontario Institute for Cancer Research, Toronto, Ontario, Canada., Akbari MR; Research Institute, Women's College Hospital, Toronto, Ontario, Canada.; Institute of Medical Science, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada., Andrulis IL; Fred A. Litwin Center for Cancer Genetics, Lunenfeld-Tanenbaum Research Institute, Mount Sinai Hospital, Toronto, Ontario, Canada.; Department of Molecular Genetics, University of Toronto, Toronto, Ontario, Canada., Aronson M; Zane Cohen Centre, Sinai Health System, Toronto, Ontario, Canada., Bell K; Ontario Health, Toronto, Ontario, Canada., Brazas MD; Ontario Institute for Cancer Research, Toronto, Ontario, Canada., Cable-Cibula M; Ontario Institute for Cancer Research, Toronto, Ontario, Canada., Chan B; Ontario Institute for Cancer Research, Toronto, Ontario, Canada., Courtot M; Ontario Institute for Cancer Research, Toronto, Ontario, Canada., Feilotter H; Ontario Institute for Cancer Research, Toronto, Ontario, Canada.; Department of Pathology and Molecular Medicine, Queens University, Kingston, Ontario, Canada.; Genome Diagnostics, Lab Medicine Program, University Health Network, Toronto, Ontario, Canada., Harland J; Ontario Institute for Cancer Research, Toronto, Ontario, Canada., Lark K; Ontario Institute for Cancer Research, Toronto, Ontario, Canada., Lerner-Ellis J; Division of Diagnostic Medical Genetics, Mount Sinai Hospital Pathology and Laboratory Medicine, Toronto, Ontario, Canada.; Department of Laboratory Medicine and Pathobiology, University of Toronto, Toronto, Ontario, Canada., MacDougall E; Research Institute, Women's College Hospital, Toronto, Ontario, Canada., Malkin D; Pediatrics, The Hospital for Sick Children, Toronto, Ontario, Canada.; Department of Medical Biophysics & Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada., Narod SA; Research Institute, Women's College Hospital, Toronto, Ontario, Canada.; Institute of Medical Science, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada., Panabaker K; Medical Genetics Program of Southwestern Ontario, London Health Sciences Centre, London, Ontario, Canada., Radvanyi L; Ontario Institute for Cancer Research, Toronto, Ontario, Canada., Rusnak A; University of Ottawa, Ottawa, Ontario, Canada.; Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.; Kingston Health Sciences Center, Queen's University, Kingston, Ontario, Canada., Stein L; Ontario Institute for Cancer Research, Toronto, Ontario, Canada., Kim RH; Ontario Institute for Cancer Research, Toronto, Ontario, Canada Raymond.Kim@uhn.ca.; Institute of Medical Science, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.; Fred A. Litwin Center for Cancer Genetics, Lunenfeld-Tanenbaum Research Institute, Mount Sinai Hospital, Toronto, Ontario, Canada.; Zane Cohen Centre, Sinai Health System, Toronto, Ontario, Canada.; Ontario Health, Toronto, Ontario, Canada.; Division of Medical Oncology and Hematology, Princess Margaret Cancer Centre and Sinai Health System, University Health Network, Toronto, Ontario, Canada.; Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, Ontario, Canada.; Department of Medicine, University of Toronto, Toronto, Ontario, Canada.
Jazyk:	angličtina
Zdroj:	BMJ open [BMJ Open] 2024 Nov 24; Vol. 14 (11), pp. e087023. Date of Electronic Publication: 2024 Nov 24.
DOI:	10.1136/bmjopen-2024-087023
Abstrakt:	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. Competing Interests: Competing interests: None declared. (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
Databáze:	MEDLINE
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