National Cancer Cohort Platform
The National Cancer Cohort Platform will create a single virtual location for national cancer cohort studies
Principal investigator
Professor Karin Thursky, implementation lead for the National Centre for Infections in Cancer, and Associate Director of Health Services Research and Implementation Science The Sir Peter MacCallum Department of Oncology, University of Melbourne
Sites
5
The National Cancer Cohort Platform (NCCP), funded by a Medical Research Future Fund (MRFF) grant, aims to create a digital asset that will bring together several influential national cancer cohort studies into one virtual location, including linkages to biospecimen repositories, and familial pedigrees.
Led by Professor Karin Thursky, the project involves a multidisciplinary team of clinicians, consumers, and researchers from health services, cancer cohorts, and digital health to establish a new research infrastructure.
The first collaboration of its kind, it incorporates KConFab, Australian Ovarian Cancer Study, Variants in Practice (ViP) Study, Lifepool, and Melanoma Research Victoria cancer cohort studies as well as BioGrid Australia, the Department of Health Services Research at Peter MacCallum Cancer Centre and the Victorian Comprehensive Cancer Centre (VCCC) Alliance.
“This initiative will drive research by making these valuable clinical assets widely available to consumers, patients, clinicians and researchers in Australia and internationally, with a view toward their sustainability and interoperability,” said Professor Thursky.
“This approach provides a real opportunity to make progress in areas of unmet need in cancer, and to harness the power of big data, including the development of a platform that will meet our future needs,” she said.
BioGrid has extensive experience providing the digital environment to support similar research programs, and specialises in centralising access to 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.
The portal will enable analysis of the cohorts in a standardised manner, allowing researchers to identify participants for future studies, including when they may be represented over several cohorts that could provide a more complete picture of participants through diagnosis and treatment.
The work will also allow development of ‘data commons’ as a standardised approach for data capture for participant and sample tracking that would facilitate cohort management. This includes facilitating future cohorts wanting to come onto the platform.
There is also significant potential to uplift the current data workflows and infrastructure used by the cohorts, particularly where paper or spreadsheets have been historically used, and allowing newer digital tools to be implemented, including housing such data in more secure repositories.
“We’re planning to produce three types of portals for this platform. One for researcher / data managers, one for clinicians and finally one for participants and consumers,” says Associate Professor Ashley Ng from the Sir Peter MacCallum Department of Oncology. A/Prof Ng is an Associate Investigator on the National Cancer Cohort Platform, and the Clinical Informatics Lead in the Department of Health Services Research.
“The idea is to use five different established cohort studies where there's been consent and curation of clinical data from volunteers who want to participate,” said A/Prof Ng, to develop these important approaches to streamline cohort management, as well as allow efficient on-boarding and management of future cohorts.
BioGrid’s platform and ethics framework is supporting the realisation of NCCP’s vision
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.
“That information is valuable and, out of respect to the people who volunteered and donated their time information, it’s important to capture and house that information in a standardised and secure way on a platform enabling use well into the future. We also anticipate this platform being a valuable national data asset that will be able to integrate cohort studies into the future,” says A/Prof Ng.
If an international collaborator wants to participate, agreements can be set up for data access and potentially transfers to or from a cohort through the right data custodians, using their instance of BioGrid as a secure and trusted player for that type of research.
Associate Professor Ashley Ng
The National Cancer Cohort Platform demonstrates how BioGrid can help researchers bring together diverse data sets in a meaningful manner through enduring, curated clinical data linkages covered by BioGrid’s unique governance framework. This is made possible because BioGrid is the only collaboration network in Australia with the legal and ethical framework to enable the sharing of real-time health and medical data.
If you’d like to find out more about how BioGrid can help you find data solutions for your research, please contact us to discuss your needs.