The Forgotten Cancers Project

A suite of epidemiological family case-control studies, investigating the genetic and behavioural dimensions of rare under-researched cancers.

Program Area:
Health & Disability
Melbourne, Vic
Project Dates:
April 2010 - 2013
Photo courtesy of The Cancer Council


The Forgotten Cancers Project is a suite of epidemiological family case-control studies which is investigating the genetic and behavioural dimensions of rare under-researched cancers.

The 15 target cancers of this project include: non-Hodgkin’s lymphoma, leukaemia, multiple myeloma, kidney, bladder, stomach, brain, liver, oesophageal, pancreatic, endometrial, thyroid, gallbladder, small intestine and bone cancer.

Little is known about the causes of many of these cancers, as incidence is lower and survival rates are on average poorer, compared with more common and well-researched cancers.

Every year, almost 28,000 Victorians are diagnosed with cancer and 11,000 die from it. Less common cancers currently account for over half of all cancer deaths in Victoria - a pattern replicated across the country. In recent decades scientists have made significant progress in understanding common cancers, however we know little about the causes of many of the less common cancers.


The objective of this project was to recruit people with less common cancers and one unaffected relative for each case through a purpose built web portal

Members of the public interested in participating in the program register on the website, which includes a complete and detailed questionnaire. A DNA sample is also collected for the genetic component of the study.

The study aims to provide a local and international resource that can be used to inform future medical research and could create pathways for the prevention of these cancers.


The first phase of this project was completed following the successful launch of the web portal and to date over 600 participants have registered online.

Additionally almost 300 participants have completed the full range of questionnaire modules which will assist researchers worldwide.


The launch of the Forgotten Cancers website and study generated a good deal of media and community interest. The comprehensive nature of the portal meant that the program was not cheap to implement.

The fact that this is an epidemiological study also meant that traditional medical research funders did not naturally prioritise the project for support. To be effective the project needed a number of funders to come together in support of the work, ensuring that no one grantmaker needed to shoulder it alone.  The Cancer Council successfully brought together 16 different philanthropic funders to fund this project.

For more information visit

Author: Caitriona Fay, Senior Program Manager


Sign up to e-Newsletter


Support Australia's most innovative projects through a donation to The Ian Potter Foundation. Your donation will support projects that address areas of particular need or opportunity, managed by credible organisations with solid track records in their particular fields.

Hey, it seems you"re using a browser that is a little past its time and our website might not be able to perform as it should. If you’d like to have the best experience on our website, you can easily find out about updating your browser here

dismiss this message