Two years of the Australian Rare Cancer Portal: a national referral service for rare cancer information and research.

Abstract

e18581 Background: Rare cancers (RC) occur at incidence < 6/100,000 and accessing treatment and evidence-based care can be challenging. Australia’s geographical distance adds complexity when referring to RC sub-specialists, clinical trials or research. The Australian Rare Cancer (ARC) Portal aims to address this unmet need. Methods: The ARC Portal is a free online academic referral hub designed to facilitate rare cancer clinical care and research. Registered cancer specialists can request RC guidelines, expert advice and molecular testing/interpretation. Patient consent allows researchers access to de-identified clinical data, with optional consent for biospecimen access, for dedicated rare cancer research projects (Melbourne Health HREC/15/MH/396). Portal case reports are collated by research fellows with reference to published evidence and expert opinion to inform treating clinician decision making. Surveys are sent at 3 time points following case completion to assess the ARC Portal impact on patient management. The ARC Portal is funded by Omico, with support from BioGrid Australia, Rare Cancers Australia and the Stafford Fox Rare Cancer Program. Results: Over two years, 924 patients have been enrolled into the ARC Portal. Demographics include 73% females, 27% males, at different disease stages from initial diagnosis (23%), on relapse/ progression (48%) or with stable disease/in remission (29%). The spread of incidence of individual cancers varied from 6/100,000 to < 0.1/100,000. Primary tumour types include gynaecological (44.4%), gastrointestinal (19%), thoracic (6%), ocular (5.2%), soft tissue (3.8%), breast (3.6%), skin (3.0%), and CNS tumors (2.5%). Endocrine, head and neck, urological, and cancers of unknown primary comprised the remaining 12.5% of cases. Longer term follow up of 100 cases demonstrated ARC Portal reports impacted clinician decision making in at least 42%. This included subsequent lines of treatment, molecular testing access or clinical trial enrolment. Conclusions: The ARC Portal uses an online centralized streamlined approach to overcome challenges and inequities inherent in rare cancer care, by optimizing clinician access to RC expertise and clinical trials; and to facilitate future RC discoveries by enabling research through collection of clinical data and accessible annotated biospecimens.