Learn more about: National Cancer Cohort Platform
February 25, 2025
The National Cancer Cohort Platform (NCCP) was one of the ground-breaking projects featured at the BioGrid 20th Anniversary Celebration. Led by Prof 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.
The cohorts hold a rich range of valuable data relating to melanoma, ovarian, breast and prostate cancers amassed over many years. Collectively they have an estimated 96,000 participants and hold around:
127,000
biospecimens
1 million
mammograms
120,000
detailed pedigrees
At the BioGrid 20th Anniversary Celebration, A/Prof Ashley Ng presented the vision behind the NCCP project, which is overcoming complex challenges to develop an important national digital asset that brings together significant and influential national cancer cohort studies into a virtual platform. The platform is being co-designed for researchers, clinicians and consumers.
Among the challenges being addressed to achieve this objective are:
- Scalability – how to manage data and biospecimens as the cohorts grow
- Gaps – lack of data and specimen visibility
- Consistency – lack of common data architecture / protocols for data and specimen storage, retrieval and tracking
- Technology - Ageing technical platforms
- Duplication – overlap and multiple separate linkages with national datasets
A/Prof Ng took the audience through the ‘Design Thinking Approach’ being used by the project, which aims to build a comprehensive ‘learning health community’ that brings together participants, consumers, clinicians, researchers, and data and health services experts. The project’s user-centric approach involves understanding user needs, developing innovative solutions, prototyping, testing, and refining based on continuous feedback.
This process requires significant stakeholder engagement, and A/Prof Ng provided an overview of the key themes emerging from engagement with all stakeholder groups. The project team now has the challenge of designing a solution that will meet the key criteria for the diverse stakeholder groups.