Information for Participants

Project Update

The Forgotten Cancers Project has now ceased recruiting.

Thank you so much to everyone who has participated in the study and helped to spread the word.

The Project has had over 4726 people with less common cancers participate, creating an invaluable resource.

We will continue to update participants with research findings and other news via an annual e-newsletter. Regular study updates will also be posted on the Forgotten Cancers website.

Please note that the research using the information you provided could take some years to complete. 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 the information.

Should you have any questions about the study or your participation or you wish to update your contact details, please contact us at forgottencancers@cancervic.org.au 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.  Your blood, saliva and DNA samples will be stored indefinitely at Cancer Council Victoria and the Genetic Epidemiology Laboratory at The University of Melbourne. Samples will be stored securely and only authorised staff will have access to them. All samples will be labelled with a unique code. Only designated staff will have the key to link that code with your personal details.

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. We will not include your name or other identifying information in any publication. We have no plan to dispose of the information, blood or DNA samples we collect because the project will continue indefinitely.

You can also see our privacy policy here .

Your participation in this study is voluntary and has no relationship to your continuing medical care. You may withdraw from the study at any time by contacting us at forgottencancers@cancervic.org.au or on 1800 068 289 . Please indicate whether you wish your information and/or samples to be destroyed or whether we may de-identify them and continue to use them anonymously.


Cancer Support & Information

Our Cancer Information and Support Service is a one-stop website where people can access evidence-based information and an extensive range of support services.

People can also call our information and support line, Cancer Council 13 11 20, which is staffed by experienced cancer nurses who are available to provide information to people affected by cancer, including family and friends.

Our nurses can:

  • Access an extensive range of free cancer information, support services and resources for callers.
  • Help people make well-informed decisions about cancer.
  • Assist people to formulate questions they can take back to their doctors.
  • Offer compassion and emotional support to people adjusting to their cancer experience.
  • Provide practical advice about how to access a range of local and regional services including financial and legal.

Call 13 11 20, 9.00am – 5.00pm (Monday to Friday) to speak with an experienced cancer nurse.