Researchers

The Resource

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

People living in Australia and aged 18 years or over at the time of diagnosis with a cancer other than breast, colorectal, melanoma, prostate, lung, cervical and mesothelioma were eligible to participate Recruitment efforts focused on the following 15 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.

Data was collected over a period of five years, from 2011-2016.

For each person with cancer, a family member (sibling or spouse) was asked to participate as a control. Participants were asked to complete a series of questionnaires related to genetic, lifestyle and environmental risk factors for cancer, as well as provide a saliva sample.

In total 2,699 cases and 1,514 controls agreed to participate in the Project, with 2,396 cases and 1,195 controls providing epidemiological data.  A saliva or blood sample was collected, and DNA extracted and stored, from 2,368 cases and 1,277 controls.  All 4,213 participants have been linked to the Australian Institute of Health and Welfare's (AIHW) Australian Cancer Database and National Death Index to verify self-reported cancer diagnoses and determine any cancer diagnoses and deaths since time of recruitment.   We have begun to undertake genetic analyses using a genome-wide array, OncoArray, in preparation for inclusion in genome-wide association studies (GWAS).  To date we processed 108 self-reported bladder, 98 kidney and 46 pancreas cancer cases.

The table below shows the number of cases of verified cancers by cancer type.  Please note some participants reported more than one cancer type and some reported cancers are still to be verified.

 

Cancer

Number of verified cases

Bladder

54

Bone

28

Brain

93

Gall bladder

17

Head & neck

84

Kidney

115

Leukaemia

283

Lymphoma

437

Multiple myeloma

200

Other haemopoietic & lymphatic

38

Liver

20

Oesophagus

35

Pancreas

74

Small intestine

48

Stomach

60

Thyroid

212

Uterus

134

Other

206

Total

2,138

Reported but not yet verified

567

 

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