The National Cancer Cohort Platform (NCCP) Project
Optimising real-world data use to drive cancer care delivery and research
Latest project news
Help Shape the National Cancer Cohort Platform (NCCP) – Researcher Design Workshops
The National Cancer Cohort Platform (NCCP) project is entering an exciting new phase, with design workshops for researchers commencing shortly. These sessions are an opportunity to directly influence how the platform will work in practice — from discovering and accessing cohort data to requesting biospecimen information.
The workshops will provide a collaborative, interactive space for researchers to help ensure the platform is practical, intuitive, and genuinely useful for research. No preparation is required — just your experience and ideas. Upcoming workshops are scheduled for:
Tuesday 10 March, 2:00pm – 3:30pm - Level 13, Peter Mac
Tuesday 17 March, 2:00pm – 3:30pm - Level 13, Peter Mac
National Cancer Cohort Platform (NCCP) Highlights – A big year of progress in 2025
2025 was an exciting and productive year for the National Cancer Cohort Platform (NCCP), with strong progress across platform planning and design, data harmonisation, and collaboration with cohorts and partners. The NCCP team also grew, welcoming new expertise in Human Factors, Data Science and Analytics to help design a platform that is both technically robust and user-friendly. A major focus was the continued redevelopment of the Lifepool and Melanoma Research Victoria (MRV) databases in partnership with BioGrid, with key milestones achieved in technical scoping, data model design, workflow improvements with development and testing underway.
Significant strides were made in developing the NCCP Common Data Model, supported by stakeholder workshops ensuring strong alignment with user needs. Co-design workshops and ongoing requirements discussions have shaped platform features, while biospecimen planning advanced through mapping current practices and exploring standardised approaches to management and tracking. Engagement remained central throughout the year, with regular partner meetings and the establishment of a dedicated Consumer and Community Group ensuring consumer perspectives inform priorities around trust, transparency, usability and returning value to participants. See the NCCP Insight newsletter for more information.
Project overview
The National Cancer Cohort Platform (NCCP) will provide a centralised and streamlined data access opportunity to ensure precious biospecimens and clinical data is used to its full potential by researchers nationally. Spearheaded by the Health Services Research team under the guidance of Professor Karin Thursky, in collaboration with BioGrid Australia, the VCCC Alliance, and five pivotal Cancer Cohort studies (AOCS, kConFab, Lifepool,MRV,ViP), this four-year MRFF National Critical Research Infrastructure project will build a new national research platform equipped with robust security measures, governance protocols, sophisticated data models, and analytical tools that will set a standard in collaborative, large-scale health research.
Professor Karin Thursky, the Associate Director of Health Services Research and Principal Investigator of the NCCP Project explains that “the National Cancer Cohort Platform will be a significant Australian digital asset that will bring together several influential national cancer cohort studies into one location, including linkages to biospecimen repositories, and familial pedigrees.”
The below interviews from the project management team, Professor Karin Thursky, Associate Professor Ashley Ng and Jodie Kirkland provide an overview of the NCCP program. Cohort representatives Associate Professor Heather Thorne OAM (kConFab), Associate Professor Lisa Devereux (LifePool), Nadia Traficante (AOCS), and Kristy Barnes-Cullen (MRV), discuss the project's value from a cohort perspective.
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..
Who are the Cohorts?
Learn about the first five research cohorts to contribute large databases of participant information which includes biospecimens, prior research results, and other data which will be brought together into a common location to enable the expansion of research projects.
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.
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.
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.
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
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).
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