Lifesaving data being collected by doctors

 

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by Katrina Kincade-Sharkey

Over her lifetime a woman has about a one-in-10 risk of developing breast cancer. That risk varies with age, peaking between 50 and 70 years, but diagnoses can occur in ages ranging from the early 20s to early 80s, so this threat is not age-selective.

As of last month’s ABS population figures, that’s 10 per cent of 11,944,250 female Australians, nearly 1.2 million Aussie women threatened throughout their lifetime.

Nor is this insidious disease socio-economically choosy. Cases are spread across the entire female spectrum, so it attacks rich and poor, energetic and sedentary, as well as our entire skin colour range. Some women, however, are at higher risk than others due to their genes and lifestyle factors.

Then there’s this planet’s ethnic mix. All women are at varying risk of developing breast cancer no matter their geographic origins, so Africans, Americans, Asians and Australians join Europeans in contending with the pain, the trauma and the potential ‘disgrace’ of losing an ‘essential’ part of their womanly shape, their sexual attractiveness, their femininity.

A group of Melbourne’s prime medical detectives is conducting a lifepool of volunteers to collect data and better understand what causes this particular cancer in those particular one-in-10 women.

The majority of participants do not have a diagnosis of breast cancer at recruitment and are followed prospectively by linkage with registry data to identify incident cancers.

The lifepool group is led by chief investigator Professor Ian Campbell from Peter MacCallum Cancer Centre (PMCC); with Professor Stephen Fox, PMCC director of molecular pathology; Professor Bruce Mann, director of the Combined Breast Service at Royal Melbourne and Royal Women’s hospitals; Vicki Pridmore, CEO of BreastScreen Victoria; and Professor John Hopper, director (research), Centre for Epidemiology and Biostatistics, University of Melbourne.

Lifepool is a population cohort — a group of women gathered through BreastScreen Victoria initially and now nationally — to provide health information samples of their DNA to determine genetic markers common to breast cancer risk.

Researchers have determined three fundamental risk elements for developing breast cancer. These are the density of a woman’s breast, genetic factors and lifestyle practices, but evaluation of their specific causes and effects is a mammoth task.

Mammographic density is the measure of the white (more dense) versus black (less dense) areas on a mammogram X-ray, and women vary in those densities.

Genetic faults in the BRCA1 and BRCA2 genes are known to put women at higher risk of breast cancer, but researchers contend many more gene faults must exist. Those other faults in the mix make the variation in risk alternate astronomically.

Launched in 2011, the lifepool study gathered details from more than 50,000 Victorian women. Having recently expanded nationally, that study figure is now 54,000, but more volunteers are still critically needed as the scheme currently supports seven research projects through collecting information from women and about women.

“Our aspiration is to grow to 60,000 women, or even more,” explains the lifepool project’s general manager, Lisa Devereux. The study will then follow the health of these women every year to learn who has developed breast cancer.

“Lifepool participants allow us to collect their mammogram data. A mammogram screen only takes about five minutes and involves no physical intrusions. We ask some participants to donate a sample of either blood or saliva so that DNA can be extracted for genetic research,” Lisa explains.

The National Breast Cancer Foundation (NBCF) provided $6.25 million funding over 10 years for the study. “This substantial funding has supported effective research infrastructure of people, a significant investment,” she praises.

NBCF is totally philanthropic, meaning this multimillion-dollar sum is completely donated by individuals and groups with no government investment. “So it is a huge gift,” Lisa smiles, gratefully.

As general manager of lifepool’s volunteer cohort, Lisa Devereux must:

  • Prepare all necessary project documentation for HREC approval of lifepool protocols and operation;
  • Develop and maintain key stakeholder relationships;
  • Manage communication strategy and promotion of project to community and researchers;
  • Develop and maintain a regular meeting schedule with investigators, advisors and collaborators;
  • Oversee the operation of the cohort including participant recruitment, design and maintenance of the database, specimen collection and clinical data acquisition;
  • Prepare all reporting documentation and manage project finances;
  • Coordinate recruitment and management of other cohort staff;
  • Manage risk and, in collaboration with the chief investigator group, develop and implement strategies and protocols for efficient, ethical operation of the lifepool project; and
  • Manage the $6.25 million grant budget across both the cohort and research arms.

“We have so far made 14,000 random contacts with prospective participants and about 7000 — or half — have responded positively and donated blood or saliva samples for research, and that donation rate is fantastic.

“The current average age of lifepool women is 59, but we have participants in their early 20s, as well as those in their 70s and 80s.

“That was an extraordinary research response because it helps us understand about new mutations that are important in contributing to the breast cancer risk.

“Chief investigators are from PMCC, BreastScreen Victoria, the University of Melbourne and the Royal Melbourne and Women’s hospitals, while PMCC’s Human Research Ethics Committee (HREC) has approved this project’s protocols and documents,” Ms Devereux says, briefly hinting at her tens of thousands of hours establishing and managing lifepool’s campaign.

This lithe, hazel-eyed, 55-year-old Master of Applied Science majored in toxicology at RMIT, directly following her Bachelor of Applied Science in medical laboratory science. She then spent 19 years as a research scientist at PMCC, initially as part of its immunology and immunogenetics department, which classifies all new leukaemia and lymphoma patients.

Academic credits include first-class honours for her graduate certificate in clinical research management through Melbourne University, yet not one word of these achievements has been mentioned during our extensive interview.

Ms Devereux was a founding member of the Australasian Biospecimen Network (ABN) and was then elected president of the Australasian Biospecimen Network Association (ABNA). Her scientific appointments include manager of the Peter MacCallum Cancer Centre Tissue Bank and research manager of the centre.

She is a member of the Cancer Council Victoria Tissue Bank Network and was a council member of the International Society for Biological and Environmental Repositories from 2007 to 2009, so is an internationally acknowledged expert in medical research. This lifepool project is an intense part of her consciousness, so she hits her sales pitch.

“Being part of lifepool involves participants completing our health and lifestyle questionnaire — it takes about 30 minutes — giving permission for lifepool to collect your mammogram information from BreastScreen, then allowing us to link with the Cancer Registry to follow your health with respect to any diagnoses of cancer,” she says, avidly encouraging any female in her vicinity to volunteer for the research collection.

Women do not have to have been diagnosed with breast cancer to donate — any adult female who has had, or intends to have, a mammogram is welcome to join.

Lisa stresses that all women’s health information and questionnaire data is stored on secure databases housed at PMCC and the University of Melbourne. Any tumour samples collected by lifepool are converted into wax blocks (called tissue microarray blocks) and then stored at Peter Mac’s tissue bank.

“In giving your consent to join this program,” she explains, “you agree to allow lifepool to keep your information securely and provide it in a de-identifying format to researchers. Then lifepool will keep you updated about the kinds of research your data and sample has supported, but we won’t pester you by asking your permission to use those samples or data in each separate research study.

“Researchers from right around the nation, in fact right around the world, can apply to us for data and samples for their research, so your donations are critically important,” she says, proudly.

Segments of those donated blood or saliva samples might be used across dozens of individual studies both here and overseas, so contacting participant donors would add a huge cost in both researchers’ time and telephonic contacts.

New volunteers to lifepool will join a study recently published in the respected Journal of Clinical Oncology.

Any woman who has had or intends to have a mammogram and would like more information about joining lifepool can contact lifepool@petermac.org.

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