A key roadblock in cancer care is dealing with fragmented, siloed, poorly described or poorly connected data.
Improving patient outcomes requires hundreds to thousands of patients whose data can be gathered in a consistent way or converted to a common data model.
By bringing together de-identified data from researchers, clinicians, institutions, and directly from patients — and structuring these pieces of data in standardised ways — Minderoo Foundation aims to bring transformative change.
We are championing global collaboration and a federated approach to cancer data sharing whereby the data stay at their original location and are analysed remotely, without data copying or transfer. This type of approach is internationally recognised as the only real solution for connecting datasets across the world.
The Federated Cancer Data (FCD) project is a global, federated alliance of de-identified cancer patient data that are connected and harmonised to a common data model. The FCD is a global not-for profit resource, with the goal of driving collaboration and unlocking siloed patient data to accelerate discovery of new therapies.
Our goal with the Federated Cancer Data (FCD) Alliance is to make the most FAIR version of cancer patient datasets findable and connected, so they can be used as a starting point for new research collaborations (with data owners), discovery and understanding.
FCD adopted the Observational Medical Outcomes Partnerships (OMOP) common data model for standardising and harmonising de-identified global cancer patient data. OMOP is a mature, open, international standard developed by a collaborative of more than 2,000 health data researchers and professionals.
Minderoo Foundation is actively engaged with the OMOP community in building a virtual centre of expertise to further enhance and drive wider adoption of the OMOP oncology data model.
The FCD is being built and scaled in a phased approach over five years, reflecting the complexity and ambition of the project and amid extensive and ongoing consultation with the cancer research community.
Phase 1 involves two pathfinder research projects commencing in late 2022 for aggressive cancers where high-quality data sharing is critical such as in adult brain cancer (glioblastoma multiforme) and in paediatric brain cancer (high grade gliomas).
Each project combines patient datasets from Australia, the US and UK, with a focus on key clinical research questions that are challenging — if not impossible — without a highly detailed, cross-country harmonised clinical dataset (combining clinical, genomics and imaging data).
Our pathfinder projects will provide further demonstrable evidence that the challenges of cross-jurisdictional data sharing — and of standardising and harmonising data — can be overcome when harnessing a federated data model.
Beyond the Pathfinder projects, there are fantastic sources of patient data that we plan to connect as part of the FCD. This includes data from:
We welcome interested parties who may wish to collaborate and bring their expertise, resources or data in support of this life-changing shared goal.