BREAST CANCER: There are several research groups looking for community input.
BREAST CANCER: There are several research groups looking for community input.

The breast cancer conversation is not just about donations

HELPING the battle against breast cancer isn't always just about raising funds. For some people, it's the opportunity to provide valuable research knowledge.

It's that research that has turned around the five-year breast cancer survival rate 76 to 91 per cent. The aim of the National Breast Cancer Foundation is by 2030 the survival rate is 100 per cent.

Australia has several cancer research organisations such as ProCan, Register4, Lifepool and kConFab looking for community input to their knowledge base through the collection of family health history, tissue samples and survey contributions.


ProCan is a global research program with up to 150 cancer research teams working together to analyse thousands of proteins from thousands of breast cancer samples to achieve a higher certainty in what will be the best treatment for a person diagnosed with breast cancer.

Project leader Professor Roger Reddel is seeking participants for a ProCan breast cancer community consultation meeting in Sydney on October 17. "The purpose of the meeting will be to outline the project, and then ask the attendees for advice on how the community could get involved," Professor Reddel advised.  

"The minimum level of involvement we are hoping for is that people would be willing to meet face-to-face annually to discuss progress, and by telephone also once per year; about six months away from the face-to-face meeting. 

"But we are seeking other ideas on how the community could be involved in the project."

Professor Reddel is quite specifically seeking people who are "likely to have good ideas".

"I am guessing that the people who would be most suitable would be people who are motivated by an experience of cancer in their family, and who have been highly successful in their own professional lives," Professor Reddel added.

For more information on ProCan, go to


Register4 is a national online database of women and men who want to fast-track cancer research.

It brings together researchers and people who share the common goal of helping to deliver greater health benefits from cancer research, faster. Participants don't have to have had cancer to help out, but they must be aged 18 and over.

When they become a member, participants will be asked to provide information about themselves. By signing up participants are only agreeing to receive emails from Register4 about opportunities to participate in research projects, and about Register4 information, newsletters and surveys.

When new projects are started Register4 sends members an invitation email or posts the research information on the Register4 Current Projects web page.

For more information and to register, go to


This is a national research initiative of the National Breast Cancer Foundation aimed at finding better ways of screening for breast cancer, improving researchers understanding of how breast cancer develops and fining better ways of predicting a woman's risk of developing the disease.

The researchers want to collect information from 100,000 women with each one contributing vital pieces of health, lifestyle and mammogram information.

Lifepool manager Lisa Devereux reports there are currently 54,000 women enrolled. Over 90 per cent of those women are BreastScreen clients.

The researchers collect DNA from the participants, as well as tumour samples from women diagnosed with breast cancer. Each participant provides consent for the use of the personal data and any tissue specimens in future research into breast cancer.

"The women in Lifepool are generally women who are not affected by breast cancer when they join the study," Ms Devereux said. "We then follow their health by annual linkage with BreastScreen and the Victorian Cancer Registry.  This resource complements kConFab in that it provides data and samples from healthy women as well as women in the community who have been affected by breast cancer, but who do not come from very high risk families."

Lifepool holds over 7000 DNA samples from women with and without a diagnosis of breast cancer. it's data is available to national and international researchers.

For more information on Lifepool, go to


The last 20 years kConFab's focus has been on collecting information and specimens from families with a strong history of breast and breast/ovarian cancer.

The genetic, epidemiological, medical and psychosocial data is kept in a "de-identified" fashion in a central database and made available to national and international researchers. In some cases, tissue specimens are collected from family members and used to look at mutations in genes such as BRCA1 and BRCA2.

kConFab national manager Associate Professor Heather Thorne said most of the families are recruited come from the family cancer clinics which are often attached to public hospitals. "Families with a high risk of breast and, or ovarian cancer are referred to these clinics by their GP," Professor Thorne said. From there a family can enrol with kConFab.

The researchers have collected data on 1400 multi-generational, multi-case families. Data from those families is being used in over 100 international familial breast cancer research projects.

"Our research internationally has advanced the area on psycho-social research; that is stress and anxiety and is it the cause of cancer, which we have shown it is not," Professor Thorne said. The work that the team at kConFab has done in the detection of gene faults such as BRCA1 and BRCA2 mutations has led to women being tested for those mutations, and to those women being able to choose cancer prevention medication or surgery to reduce their risk.

"We are also very active in research that is translating to new cancer treatment options such as parp inhibitors which are being used in women and men with advanced breast, ovarian and prostate cancer," Professor Thorne said.  

For more information, go to

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