NOTE: Since its discovery in 1995, this type of hereditary cancer has changed from one type of cancer, caused by mutations in only one gene to several types of cancer, caused by mutations in any of many different genes. As a result, all labels used to describe this syndrome, such as ''breast cancer gene'', ''BRCA'', ''hereditary breast and ovarian cancer'' and ''HBOC'' tell only part of the story, leaving out well over half of those who are affected. To better serve our patient group, we are in the process of changing our name and updating all resources to reflect the fully inclusive and future forward RISKY GENES™ brand. We ask for your patience during this process.
This is by no means an exhaustive list. For the most part, the studies below represent those in which the organizers requested presence on this page. If you have a study you would like added, please contact us.
The Henrietta Banting Breast Centre (HBBC) database contains information about new breast cancer cases seen at Women’s College Hospital. To date, clinical and risk factors have been recorded for over 2,500 women. The registry is now the largest repository of records available tracing information about women with breast cancer.
Registry of BRCA carriers This is an international registry of women above the age of 25 years old who have been found to have a deleterious mutation in either the BRCA1 or BRCA2 gene. It is housed at the Familial Breast Cancer Research Unit in Toronto. Information on medical histories and risk factors is collected in the form of questionnaires and family pedigrees. There are currently over 10,000 study subjects enrolled from 65 centers in 11 countries in Canada, USA, and Europe, and Asia. This registry is the result of the multicenter study entitled: Risk Factor Analysis of Hereditary Breast and Ovarian Cancer.
Familial Ovarian Tumour Study This collaborative study includes women that were diagnosed with ovarian cancer in Ontario between 1995 and 1999. To date, we have collected a DNA sample, pedigree and lifestyle questionnaire on more than 1800 women. This is the largest database of its type.
DNA bank Dr. Narod’s DNA bank at Women’s College Hospital now holds samples from over 25,000 study subjects, of whom approximately 20,000 are cancer patients and 5,000 are controls. Most of the major cancer sites are represented. Family trees are available for the majority of the patients and controls.
Studies, Trials and Registries
Familial Breast Cancer Research Unit, led by Tier 1 Canada Research Chair Dr. Steven Narod, a world leader in the study of inherited cancers.
With a particular focus on breast and ovarian cancers, Dr. Narod leads this WCRI team in the study of genetic mutations that are known to increase the risk of many cancers – most notably the BRCA1 and BRCA2 mutations. Through its extensive research, publications, data collection, genetic testing programs and collaborations, the team has become an internationally renowned leader in identifying and developing effective strategies to prevent and manage these cancers women and families with a high inherited risk.
Follow-up Telephone Genetic Counselling Study
Risk Factor Analysis of Hereditary Breast and Ovarian cancer
Reducing the bUrden of Breast cancer in Young women (RUBY) Study
A Study of Familial Breast Cancer in BRCA-Negative Families
Preventive Ovarian Surgery and Bone and Heart Health
A Study of Familial Cancer in Jewish Women - Follow-up
University of Alberta
University of Hartford
University of Toronto
Posted December 3, 2015
An online survey to understand what breast cancer survivors need to be more active.
Posted October 1, 2015
Study of Cancer Surveillance and Prevention Practices Associated with BRCA1 and BRCA2 Mutations
Contact Dr. Kelly Pender, Associate Professor of English at Virginia Tech, at 540-808-9563 or email@example.com
Posted March 23, 2015
Study for Early Detection of Ovarian Cancer. This study is being conducted by MD Anderson for the early detection of ovarian cancer, and they recently got funding to add another 1,000 women. Currently, there are about 5,000 women in the study around the country. Contact Vsolano@mdanderson.org