About the Project

"Did you know that 1 in 2 Australians will be diagnosed with cancer by the age of 85? Over the past 2 to 3 decades, extensive research has been conducted on common cancers , increasing our understanding of their causes and improving survival. Now is the time to focus on the less common cancers , because they account for over half of all cancer deaths in Victoria and we have not forgotten the thousands of lives that are affected by them every year.
Cancer Council Victoria believes it’s now time to improve our understanding of these cancers and their causes so we can be in a better position to prevent them and support people who get them in the future.
And to do so, we need you."

- Todd Harper, CEO, Cancer Council Victoria


The Project aims to understand the causes of less common cancers such as non-Hodgkin lymphoma, leukaemia, multiple myeloma, kidney, bladder, stomach, brain, liver, oesophageal, pancreatic, endometrial/uterine, thyroid, gallbladder, small intestine, bone and other rare cancers as relatively little is known about them.

By studying the roles of genes, lifestyle and early life environment the research is seeking to understand why people develop these cancers, to be in a better position to improve the prevention and treatment of these diseases in the future.

The Forgotten Cancers Project is run by Cancer Council Victoria, as part of a consortium including hospitals, universities and research institutions both in Australia and overseas. The chief investigator is Professor Graham Giles, Director of the Cancer Epidemiology Centre at Cancer Council Victoria. 

The conduct of The Forgotten Cancers Project has been approved by the Human Research Ethics Committee of Cancer Council Victoria .


What is involved?

You will be required to register and complete online questionnaires that will collect information about your family cancer history, your health and other personal information related to your lifestyle and occupation. If you prefer to complete a hard-copy questionnaire please contact the research team. You are welcome to get someone you know to help you complete the questionnaires or, if necessary, we can assist you over the phone.

You will be asked to complete four questionnaires:

  1. Lifetime Calendar : this asks about the places you have lived and the jobs you have had over your lifetime.
  2. Family History Questionnaire : this asks about your family and the history of cancer in your family.  After reviewing this questionnaire we might ask for your permission to contact some of your family members to invite them to participate in the project.
  3. The Forgotten Cancers Questionnaire : this asks questions about some health conditions and medical tests, and lifestyle.
  4. Diet Questionnaire : this asks questions about your diet.

It is difficult to estimate the time it will take you to complete the questionnaires. On average we believe it will take you about an hour. You will not have to do it all in one go. Once registered, you will be able to log in and out at any time and any details you complete will be saved for you to continue completing at your convenience.

You will also be asked to give a saliva sample for DNA analysis. Saliva kits will be sent to you and can be returned to us via reply-paid post. In exceptional circumstances, we may ask you to donate a blood sample, but this would be entirely voluntary and we would contact you directly to ask for your consent.

Please read our FAQs for more information.


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The Forgotten Cancers Project team

Prof. Graham Giles Prof. Graham Giles BSc, MSc, PhD Director, Cancer Epidemiology Centre

After post-doctoral work on the epidemiology of leukaemia and lymphoma in Tasmania, Graham Giles joined Cancer Council in 1983 as Director of the Victorian Cancer Registry. In 1986, he was appointed Director of Cancer Epidemiology Centre, and in 2001 became Deputy Director of the Cancer Control Research Institute. He has honorary professorial appointments at Melbourne, Monash and Deakin Universities, and serves on several national and international committees including the Scientific Council of the International Agency for Research on Cancer in Lyons, France.


Fiona Bruinsma Fiona Bruinsma, BBSc, Grad Dip App Psych, MA App Sc (Epidemiology), Dr Pub Health Research Coordinator - External Programs

Dr Fiona Bruinsma has worked in cancer and reproductive epidemiology for over 15 years. She completed a Doctorate of Public Health in 2010; the topic of her thesis was‘Pregnancy outcomes following treatment for cervical dysplasia'. Since joining us in early 2011 she's been involved in co-ordinating studies investigating lifestyle and genetic risk factors for prostate cancer, kidney cancer and multiple myeloma.


Juliet Anderson Juliet Anderson, Forgotten Cancers Project Manager

Juliet started working at the CEC in 2006 as a casual assistant on the Health 2020 study. After a year abroad, she returned to work as an assistant to the CONFIRM Kidney study before joining the data management team. While working as a data manager, she was responsible for designing the data and online specifications for The Forgotten Cancers Project which stood her in good stead to take over the management of the project a year later.