The National Cancer Cohort Platform (NCCP) Project

Sponsor 

• Peter MacCallum Cancer Centre 

Funding 

• The Medical Research Future Fund (MRFF)

Principal investigator 

Professor Karin Thursky

Genevieve Chappell
Project Manager

Associate Professor Ashley Ng
Clinical Informatics Lead

See also Digital health and learning systems

Chandrani Dhar
Data Architect

Jodie Kirkland
Communications Manager

BioGrid's platform and ethics framework is supporting the realisation of NCCP’s vision. With extensive experience providing the digital environment to support similar research programs, BioGrid specialises in centralising access to de-identified, distributed data sets and biobanks via their national data governance and connectivity platform. A key part of BioGrid’s offering is the proven ability to protect patient and clinician privacy and data security.

BioGrid’s role includes assisting with the multi-institutional agreements needed for cohort studies come on board and join the platform, which ensures consistent data security and data privacy standards.

The National Cancer Cohort Platform is one of many case studies described on the BioGrid website to provide real-world examples of the ways in which BioGrid’s federated national data linkage platform and associated services have been used to enable access to real time hospital, clinical registry and/or general practice data, and how BioGrid’s unique data governance model streamlines data access, ensuring time and resources are used efficiently.

If you’d like to find out more about how BioGrid can help you find data solutions for your research, please access Biogrid.org.au or contact This email address is being protected from spambots. You need JavaScript enabled to view it..

The Kathleen Cuningham Foundation Consortium for Research into Familial Aspects of Breast Cancer (kConFab) brings together geneticists, clinicians, community representatives, surgeons, genetic counsellors, psychosocial researchers, pathologists and epidemiologists from all over Australia and New Zealand who believe the causes and consequences of familial predisposition to breast and ovarian cancer can be understood only by a concerted national effort at both the basic and clinical level.

kConFab provides a resource upon which researchers can draw, making data and biospecimens widely available to researchers for use in peer-reviewed, ethically-approved funded research projects on familial aspects of breast and ovarian cancer. 

A selection of current kConFab initiatives:

• Participate in a world-first clinical trial to prevent breast cancer in women with the BRCA1 gene mutation.
• Defining Hereditary Structural Genomic Variants and Aberrant Gene Methylation in Hereditary Breast Cancer Families with no Defined Mutations in Breast Cancer Susceptibility Genes
• Patient reported outcomes in women from the kConFab consortium undergoing risk reducing surgery versus surgery for cancer
• Determinants of immune activity and molecular features in BRCA1/2 mutation carriers
• To request data from kConFab for your research project visit kConFab
• To enrol in the kConFab cohort as somebody affected by breast cancer visit kConFab

Lifepool is a population cohort (a group of women supporting research who have been recruited from the general population).  It was established to support research into breast cancer and other important womens’ health issues.

Lifepool is supporting research to improve our understanding of how breast cancers develop, to find better ways of screening for these cancers, and to predict individual risk, as well as focus on other important areas of womens’ health. Lifepool is a research study for every woman, including women who have had a diagnosis of cancer and women who have not, collecting blood or saliva samples for genetic research, as well as tumour samples from women diagnosed with breast cancer.

All women can contribute to the Lifepool project, contributing precious drops of information into a secure ‘pool’ of data. The information contributed and collected is deidentified through use of a unique Lifepool ID number for each participant so that privacy and confidentiality is assured. The Lifepool cohort resources are available for use in national and international research, subject to careful review by the Lifepool Access Committee.

Lifepool currently has over 55,000 participants, many with more than 12 years of follow-up data. Lifepool holds over 1 million digital mammogram images and contains a genetic library of over 17,000 DNA samples from women both affected and unaffected by cancer.

To discuss how the resource can support your research please contact This email address is being protected from spambots. You need JavaScript enabled to view it..

To join Lifepool as a participant or to ask questions about participation, please email This email address is being protected from spambots. You need JavaScript enabled to view it. with your name, date of birth, email, and postal address.

For more information, visit Lifepool.

Melanoma Research Victoria (MRV) is an award-winning collaborative research program that engages with all stakeholders including patients, carers, researchers, clinicians, government, and industry, to improve outcomes for melanoma patients.

Founded in 2010 as the Melbourne Melanoma Project, the MRV cohort has increased to >3900 participants over 11 years and with more than 56,000 biospecimens available for research projects. Participants continue to be recruited from MRV’s partner organisations to facilitate melanoma research. MRV has supported 99 research projects to date and MRV participants are included in an average of 11 research projects.

To collaborate with MRV as a researcher please visit their webpage for resource information and to access the MRV application form, which can be returned to This email address is being protected from spambots. You need JavaScript enabled to view it. when complete.

Consumer engagement was incorporated into MRV from the outset. Our MRV Consumer Reference Group (CRG) continues to support multiple research projects. Melanoma patients or carers wishing to become a consumer member and contribute to melanoma research are encouraged to contact us via our email This email address is being protected from spambots. You need JavaScript enabled to view it..

The Australian Ovarian Cancer Study is a joint study between Peter MacCallum Cancer Centre, Westmead Institute for Medical Research and QIMR Berghofer Medical Research Institute in collaboration with many clinicians and treatment centres across Australia. Patient recruitment commenced in 2002 and since then we have supported over 145 national and international projects, contributed to over 241 peer-reviewed publications, and facilitated the registration of new drugs in Australia to treat women with ovarian cancer. Over 3000 women with ovarian cancer have enrolled in the study, allowing for the development of a uniquely powerful resource comprising of biospecimens, clinical outcomes, and epidemiological data.

To make a research enquiry and access the AOCS resources, please visit the AOCS site.

For any other enquiries including to establish your eligibility for involvement in a current study, please contact This email address is being protected from spambots. You need JavaScript enabled to view it..

Based out of the Familial Cancer Research Centre, the ViP (Variants in Practice) study is a clinic-based cohort of high-risk breast and ovarian cancer families with research focuses on SNPs (Single Nucleotide Polymorphisms) and genomic testing, discovering novel rare variants, combining rare variant and genomic testing results, and facilitating inter-institutional collaborations.

Currently over 9000 participants are involved in ViP, and nearly 9000 biospecimens have been collected.

Please direct enquiries to This email address is being protected from spambots. You need JavaScript enabled to view it..

On Tuesday 26 November our project partners, BioGrid Australia, celebrated their 20th anniversary with an all-day event at Woodward house, University of Melbourne.

During the event, the NCCP project Principal Investigator and Associate Director of Health Services Research at Peter Mac, Professor Karin Thursky, convened a session ‘MRFF Research Data Infrastructure Grants: Leveraging the BioGrid Platform,’ where Clinical Informatician Associate Professor Ashley Ng discussed the NCCP project.

View the full event program. Special thanks to BioGrid for the below image of Professor Thursky.

NCCP Insight newsletter was circulated in August 2024. Read the first NCCP Insight Newsletter.

On 9 May 2024, a project launch event brought together an audience of key stakeholders and members of the cohort community who were treated to an overview of the project from several perspectives, as well as an engaging panel discussion with the cohort managers to conclude. Speakers include:

• Professor Karin Thursky, Associate Director of Health Services Research and NCCP Principal Investigator
• Maureen Turner, CEO of BioGrid Australia and Javier Haurat, Project and Data Science Manager
• Sophy Athan, VCCC Alliance consumer representative
• Professor Bruce Mann, Director of Breast Tumour Stream at PMCC and Director of Breast Services for the Royal Women’s and Royal Melbourne hospitals
• Professor Grant McArthur AO, CEO of VCCC Alliance and McArthur Lab Group Leader at Peter MacCallum Cancer Centre
• Associate Professor Ashley Ng, Health Services Research Clinical Informatics Lead and Clinical Haematologist
• Cohort Panel Discussion featuring Associate Professor Heather Thorne OAM (kConFab), Associate Professor Lisa Devereux (Lifepool), Nadia Traficante (AOCS), Simone McInerny (ViP), Kristy Barnes-Cullen (MRV) and Gerda Evans (consumer advocate – kConFab)

On April 29th 2024 the NCCP Project was featured in the popular weekly Monday Lunchtime Livestream session facilitated by the VCCC Alliance. Viewers enjoyed perspectives from NCCP Clinical Informatician Associate Professor Ashley Ng, NCCP Project Manager Genevieve Chappell, BioGrid CEO Maureen Turner, and Consumer Advocate and Leader, Sophy Athan.

Also involved in the discussion were managers from the foundational cohorts, Nadia Traficante (AOCS), Associate Professor Heather Thorne OAM (kConFab), Associate Professor Lisa Devereux (Lifepool), and Sonia Mailer (MRV).