Ontario Familial Colorectal Cancer Registry (OFCCR)
In 1997, the US National Institutes of Health funded the Colon Cancer Family Registries, a consortium and research resource created to facilitate gene-gene and gene-environment studies related to the etiology, prevention and clinical management of colorectal cancer. The Ontario Familial Colorectal Cancer Registry (OFCCR) currently hosted at the Lunenfeld-Tanenbaum Research Institute at Sinai Health in Toronto is a member of this consortium, along with five other centres in North America and Australia: Fred Hutchinson Cancer Research Centre (Seattle), Mayo Clinic (Minnesota), University of Southern California Consortium at Los Angeles (California), University of Hawaii Manoa (Hawaii) and University of Melbourne (Australia).
The OFCCR is a colon cancer family registry that collects personal and family health information and biospecimens (such as blood and tissue samples) from Ontario residents who are diagnosed with colorectal cancer. Participants’ family members are also invited to take part in the study and asked to provide similar personal and family health information and biospecimens. The registry also includes people with no personal or family history of cancer and their data is used for comparison purposes in a variety of research studies.
As of 2013, we completed three phases of recruitment and follow up for the registry with over 2616 participants with colorectal cancer and 4761 family members participating in the OFCCR. This vast amount of epidemiologic, cancer information, family pedigrees and genetic data support research on genetic forms of colorectal cancer and new preventive and therapeutic strategies to combat it. The Ontario registry data are used for Ontario studies and also combined with data from the other five international sites of the consortium for large international research projects. The registry is a valuable research resource and has already contributed to more than 450 peer-reviewed scientific publications.
We are now in phase six of the project where we are conducting 5, 10, 15 and 20 year follow-up questionnaires with existing participants and their family members.
The Principal Investigator is:
Dr. Steven Gallinger, MD, MSc, FRCSC
Professor of Surgery, University of Toronto
Advisor, PanCuRx Translational Research Initiative in
Pancreas Cancer, Ontario Institute for Cancer Research
Hepatobiliary/pancreatic surgeon (retired), University
Health Network & Mount Sinai Hospital
Senior Scientist, PI – Ontario Pancreas Cancer Study,
Ontario Familial Colorectal Cancer Registry Lunenfeld Tanenbaum Research
Institute, Sinai Health
Co-Director – McCain Centre for Pancreas Cancer, Princess Margaret Cancer Centre
If you would like more information or have questions regarding your participation, please contact Cary Greenberg, project manager at:
Ontario Familial Colorectal Cancer Registry
60 Murray Street, Box 31
Toronto, Ontario, M5T 3L9
Canada