Background

The Australian Ovarian Cancer Study (AOCS) is a unique resource for ovarian cancer research, made possible through the collaborative spirit of clinicians, nurses, pathologists and scientists throughout Australia and through the willingness of thousands of women who participate in this vital program. AOCS represents an extraordinarily rich and flexible biospecimen repository with linked clinical and epidemiological data, used by national and international studies to address clinically important questions about the causes and treatment of ovarian cancer.

AOCS was initially funded by the United States Ovarian Cancer Research Program, part of the Congressionally Directed Medical Research Program of the US Department of Defence. Between 2002 and 2006, a total of 2,456 women with suspected epithelial ovarian cancer from all Australian states consented to take part in the study, of whom 1859 had invasive or borderline ovarian tumours. With frozen (n=1,012) and fixed (n=1,358) tumour specimens, we have created one of the largest resources for ovarian cancer in the world. Since 2006, recruitment focused on women whose cancer has recurred, as well as long-term survivors of certain aggressive forms of ovarian cancer.

Comprehensive clinical data documenting the cancer journey of women with ovarian cancer is collected, including treatments, diagnostic tests and outcome. A minimum of five years follow-up data has been collected for all women and over 10 years follow-up on women recruited early in the study. Access to medical records from consented participants is approved to continue through to December 2017.

Detailed epidemiological data have been collected from cases and demographically matched control women (1,065 enrolled), allowing us to refine information about known environmental risk factors, and understand how environmental and genetic risk for ovarian cancer may intersect and guide prevention strategies.

AOCS supports many research projects examining the genetic makeup of cancer bio-specimens. The goal is to comprehensively map gene mutation, expression and DNA copy number variation in tumour samples and relate this to treatment response. Major goals of the study are to identify genetic and biochemical changes in cancers that dictate a woman's responsiveness to chemotherapy, evolution of treatment resistance and overall survival.

Mutations in several genes, including BRCA1 and BRCA2, are known to substantially increase a woman's risk of primary epithelial ovarian cancer. Previous data from North America indicated that these mutations are more common than previously thought. AOCS represented a unique population-based cohort where such findings could be tested and results used to inform guidelines for offering genetic testing to women with invasive ovarian cancer and their family members. AOCS provided a significant impetus to recast the genetic testing guidelines for women with ovarian cancer in Australia and other countries. Through AOCS-supported projects and as an active member of the international Ovarian Cancer Association Consortium (OCAC), we are identifying other genetic variants that contribute to the development of ovarian cancer.

AOCS is an international resource, and researchers can apply to access bio-specimens and data through the AOCS Management Committee. Applications are assessed on the basis of their scientific merit, whether they represent an appropriate use of scarce resources (such as bio-specimens) and whether they have been approved by a properly constituted institutional Human Research Ethics Committee.

Funding

AOCS was initially established through a program grant provided by the United States Ovarian Cancer Research Program (OCRP), part of the Congressionally Directed Medical Research Program of the US Department of Defence. Throughout the last decade AOCS received additional funding from the Australian National Health and Medical Research Council, Cancer Councils throughout Australia, peer-reviewed national and international grants, and industry support.

Between 2014 and 2017 AOCS received important funding support from Ovarian Cancer Australia and the Peter MacCallum Cancer Foundation. This support underwrote many of the core activities of AOCS, allowing the Study to facilitate research in ovarian cancer throughout Australia and overseas.