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

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

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...

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Main Authors: Vasily Giannakeas, Amanda Smith, Hong Wang, Harriet Feilotter, Melyssa Aronson, Andrea Eisen, Raymond H Kim, Jordan Lerner-Ellis, Steven A Narod, Laszlo Radvanyi, Kathleen Bell, Jane Bayani, Ian King, DAVID MALKIN, Kathy Chun, Irene L Andrulis, Bailey Gallinger, Anita Villani, George Charames, Lincoln Stein, Sarah Sawyer, Karen Panabaker, Philip Awadalla, Trevor Pugh, Mohammad Reza Akbari, Peter Goodhand, Brandon Chan, Yael Silberman, Jennifer Brooks, Melanie Spears, Kirsten M Farncombe, Lauren K Hughes, Elif Tuzlali, Michelle D Brazas, Melissa Cable-Cibula, Melanie Courtot, Jamie Harland, Katie Lark, Ellen MacDougall, Alison Rusnak, Christopher Deutschman, Chiquita Hessels, Brittney Johnstone, Talia Mancuso, Kelly McDonald, Meredith McLaren, Karen Ott, Stephen Parrott, Wendy Parulekar, Aaron Pollet, Laila Schenkel, Larissa Waldman, Martin Yaffe
Format: Article
Language:English
Published: BMJ Publishing Group 2024-11-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/14/11/e087023.full
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