Background:The Australian Rare Cancer (ARC) Portal was established in 2019 as a clinician-led initiative to address the inequities and complexities of accessing evidence-based care for patients with rare cancers(RC). With support from Omico (Australian Genomic Cancer Medicine Centre) and BioGrid Australia, the ARC Portal's online referral platform constitutes an innovative way of accessing specific clinical expertise as well as contribution to research.
Methods:The ARC Portal allows cancer specialists to register patients for research enrolment, as well as literature review, molecular testing information and expert advice on management tailored to the patient, free-of-charge. Patient consent covers enrolment for collection of clinical data and optional biospecimens for research (Melbourne Health HREC/15/MH/396).
Results:Of 181 cases recently referred to the ARC portal, clinician referral requests included identification of guidelines (50%), expert opinion (60%) and molecular test advice/interpretation (50%). A minority of cases (15%) were referred specifically for research which may inform future clinical options.
The ARC portal produced a curated literature review including guidelines in 80% (n=136/171). Recent guidelines (<5years) were not available for 36% (n=48/136). Most referrals (78%; n=133/171) received recommendations to guide therapy. The level of evidence supporting these recommendations were:guidelines/standard of care in 41% (n=55/133); consensus/prospective data in 33% (n=44/133);case reports in 13% (n=17/133) reflecting the paucity of information available for some RC. Local/international expert opinion was additionally provided in 41% (n=55/133).
Recommendations with regard to genomic testing was provided in 68% (n=117/173). Further genomic testing, inclusive of MoST, was recommended in [78% (n=84/108]. A review of pathological diagnosis was recommended and facilitated in 7% of referrals (n=13/181). An appropriate clinical trial was identified in 39% (n=51/131) and specific drug access pathways identified for referrers in 18% (n=23/131).
Conclusion:Online access to individualised RC clinical guidance and research programs via the ARC Portal aims to assist clinician management of patients with RC.