In addition to supporting clinicians with patient management, the ARC Portal also contributes to cancer research.
Our consent model invites patients to participate in the WEHI Stafford Fox Rare Cancer Program, which collects de-identified clinical information and tumour tissue and other biospecimens, such as blood or hair samples, for research. Patient uptake has been high, with 84.7% consenting to provision of tumour specimens and 84.1% consenting to provision of other biospecimens, such as blood or hair samples.
Through this model of biospecimen consent, the Portal (along with its partner organisation, the Molecular Screening and Therapeutics Program) has been involved in the sequencing of more than 700 rare tumours, including whole genome sequencing, of which nearly half have identified highly actionable findings.
This data collection has, in turn, led to the development of several research projects which would not have been feasible were it not for the national capabilities and reach of the ARC Portal.