Project Update

The Forgotten Cancers Project ceased recruitment in late 2016.  Thank you to everyone who participated in the study.

Research using the information you provided will take some years to complete.  While the project includes a large number of less common cancers, for individual cancer types the numbers are still small and maximum benefit will be achieved by contributing the data to pooled studies conducted by international consortia. When research findings become available we will provide updates on the website.  We will also provide updates on other research we are conducting into less common cancers.

We will not be providing you with personal results unless they have important implications for your health or the health of your family. If our research uncovers any such information, we will seek approval from Cancer Council Victoria’s Human Research Ethics Committee to contact you, or the members of your family affected by the information, and offer access to the information.  You, or your family members, may decline to receive any such information.

Should you have any questions about the study or your participation or you wish to update your contact details, please contact us at or on 1800 068 289.

Privacy and Confidentiality

Information that identifies you, such as your name, date of birth and address, is only available to staff employed by the Cancer Council Victoria to maintain contact with you, the external company contracted to manage the questionnaire data, and the external laboratory that processes your samples.

All written information that identifies you is stored in an area with access restricted to a small number of staff within these organisations.  All individuals who have access to confidential data are required to sign confidentiality agreements.  All electronic records that have your name and address are stored on a password protected computer system.  Biological samples are stored securely and only authorised staff have access to them. All samples are labelled with a unique code. Only designated staff have the key to link that code with your personal details. Biological samples collected during the Project were stored at the University of Melbourne's Genetic Epidemiology Laboratory (GEL) until November 2018.  In November 2018 GEL moved from the auspice of the University of Melbourne to Monash University.  All samples were transferred to Monash University. Your blood, saliva and DNA samples will be stored indefinitely at Cancer Council Victoria and GEL at Monash University.

Information that does not contain your name may be made available to other researchers, including researchers interstate and overseas for studies that have been approved by Cancer Council Victoria’s Human Research Ethics Committee. This information may include samples of your blood or DNA. Your name or other identifying information will not be included in any publication. We have no plan to dispose of the information, blood or DNA samples because the project will continue indefinitely.

You can also see our privacy policy here .

You may withdraw from the study at any time by contacting us at or on 1800 068 289 . If you withdraw, we will ask whether you wish your information and/or samples to be destroyed or whether we may de-identify them and continue to use them anonymously.  If data has already been used in analyses this will be unable to be withdrawn.