Aims: Rare cancers have an incidence of <6/100,000. Accessing treatment and evidence-based care can be challenging. Australia’s geographical distance adds complexity when considering referral to specialists, clinical trials or research. The Australian Rare Cancer Portal (arcportal.org.au) is an online service that aims to address this need. Registered cancer specialists can refer patients to receive streamlined access to available rare cancer guidelines; expert opinions; molecular testing advice and interpretation; and identification of clinical trials and research programs.
Methods: We reviewed 100 consecutive reports to establish patterns of referring oncologist’s service requests and characteristics of reports returned. Follow up of outcome and satisfaction is ongoing and will be reported subsequently.
Results: 100 reports were reviewed: 78 provided guideline advice, with most curated from either current (<5 years) cancer organization guidelines (n=66), expert group consensus papers (n=2), or peer reviewed articles by an expert author. Rare cancer expert opinion(s) were provided in 57 reports, 32 involving at least one international clinician. 89% offered genomic advice including access to testing platforms (e.g the MoST program) or the interpretation of an existing report (25); with the identification of a potential genomic directed therapy in 15. Management recommendations were provided in 91 reports that were based on either published guidelines (47) or expert consensus or prospective data (27) in most cases. Lower quality recommendations were based on conflicting or retrospective data (8) or case reports/series (4) only. In 28 reports a relevant clinical trial was identified and 18 patients were enrolled into an active WEHI-Stafford Fox Rare Cancer Program sub-study.
Conclusion: The ARC Portal is a free resource accessible to Australia’s oncologists. The program aims to streamline access for clinicians and patients with rare cancers to expert advice and improve research opportunities. This review highlights services most frequently requested by referring oncologists.