Background
Australians diagnosed with a rare cancer (defined as an incidence of less than 6 per 100, 000 per annum) collectively account for up to 18% of new cancer diagnoses per year. Yet, individually, Australians diagnosed with a rare cancer face additional challenges including obtaining an accurate diagnosis, access to rare tumour expertise and under-representation in research and clinical trials.
The Australian Rare Cancer (ARC) Portal is an online service that aims to address these challenges and improve outcomes for Australians with rare cancers. The ARC Portal streamlines rare cancer care by providing cancer specialists with single access point to clinical guidance via a national network of rare cancer expertise. In partnership with the WEHI Stafford Fox Rare Cancer Program (SFRC) the ARC Portal will help collect curated rare cancer clinical data to underpin rare cancer research. Patients referred to the ARC Portal may also elect to contribute their tumour tissue for research, creating a rich clinically annotated tumour bank.
Methods
The ARC Portal is a web-based platform, designed as a national referral service for cancer specialists and their patients. Referring clinicians register patients to the ARC Portal using an approved online consent process without the need for individual study site approvals. The ARC Portal will help facilitate sub-specialist review; provide best available evidence regarding treatment options; advise on molecular testing options or interpretation; and enrol patients for rare cancer research.
Referrals are processed through an integrated workflow involving portal clinicians, tumour experts and multidisciplinary review. During this process, clinical data and specialist feedback is curated to build a rare cancer knowledge base and will share de-identified data with the SFRC program, providing high quality national data for rare cancer research. The ARC Portal is open nationally to referrals via www.arcportal.org.au