Article
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.
BMJ open - 24 Nov 2024
Farncombe Kirsten M, Hughes Lauren K, Tuzlali Elif, Akbari Mohammad Reza, Andrulis Irene L, Aronson Melyssa, Bell Kathleen, Brazas Michelle D, Cable-Cibula Melissa, Chan Brandon, Courtot Melanie, Feilotter Harriet, Harland Jamie, Lark Katie, Lerner-Ellis Jordan, MacDougall Ellen, Malkin David, Narod Steven A, Panabaker Karen, Radvanyi Laszlo, Rusnak Alison, Stein Lincoln, Kim Raymond H
Abstract excerpt
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...
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