The IBCCS was initiated in 1997 as a collaborative European study of women carrying a deleterious mutation in BRCA1 or BRCA2. The general purpose of this study is to estimate prospectively the risks of breast, ovarian, and other cancers in BRCA1 and BRCA2 (BRCA1/2) carriers and to assess lifestyle and genetic factors that may modify the cancer risks.
Specific aims:
- More precisely estimate the age, sex, and site-specific cancer risks due to mutations in the BRCA1 and BRCA2 genes;
- Assess the importance of risk factors as known in the general population, in determining the cancer risks in the BRCA1/2 mutation carriers;
- Examine the efficacy of prophylactic surgery and other screening/prevention options in these high risk women;
- Create an ongoing registry of gene carriers for potential use in future clinical trials.
The knowledge gained from this prospective observational study will allow family cancer clinics in each country to provide more accurate risk information to women who are found to be gene carriers. Thus, BRCA1/2 mutation carriers may make more informed choices regarding their options for prevention and screening.
Coordination:
The data for the IBCCS is collected at different centers in 15 countries. Dr. David Goldgar started the coordination of the study at the International Agency of Cancer Research (IARC) in Lyon, France. From 2008 onwards Dr. Matti Rookus (m.rookus@nki.nl) coordinates the study at the Netherlands Cancer Institute (NKI) in the Netherlands (data manager: Marie-José Blom, MSc, mj.blom@nki.nl).
More information on the IBCCS can be found on www.ibccs.nl