Information for Researchers


The Resource

The Forgotten Cancers Project uses a family, case-control study design.

Data has been collected over a period of five years, from 2011-2016, from participants living in Australia aged 18 years or over at the time of diagnosis with a less common cancer.

All those diagnosed with a cancer other than breast, colorectal, melanoma, prostate, lung, cervical and mesothelioma were eligible to participate, however recruitment efforts focused on the 15 most frequently diagnosed less common cancers: non-Hodgkin lymphoma, leukaemia, multiple myeloma, kidney, bladder, stomach, brain, liver, oesophageal, pancreatic, endometrial/uterine, thyroid, gallbladder, small intestine, and bone cancer.

For each proband, a control (family member) was recruited. Participants were asked to complete a series of questionnaires related to genetic, lifestyle and environmental risk factors for cancer, as well as a saliva sample.

In total 2,726 probands and 1,532 controls were recruited to the Project. Epidemiological data was collected for 3,858 participants and has been linked to the Australian Institute of Health and Welfare’s (AIHW) Australian Cancer Database and National Death Index. Biospecimens were collected from 3,755 participants and sent to The University of Melbourne’s Genetic Epidemiology Laboratory (GEL) where they were processed, had DNA extracted, and aliquots of DNA stored in a bio-repository.

Summary data will be provided in the near future, please check this page for updates.


Expression of Interest

For any data access enquiries please complete the form below.

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