The Australian Rare Cancer Portal: A national novel online referral service for optimising and coordinating care for rare cancer patients

Dr Allison Bourne1, Mr Javier Haurat1, Dr Damien Kee2, Dr  Chloe Georgiou3

1Australian Rare Cancer Portal, BioGrid Australia, Parkville, Australia
2Peter MacCallum Cancer Centre, Parkville, Australia
3Bendigo Health, Bendigo, Australia

Introduction: Rare cancers have an incidence <6/100,000), however, account for 22% of cancer diagnoses and 30% of deaths. Access to specialists and clinical trials can be hampered by distance, and treatments are difficult to access. The Australian Rare Cancer Portal (Portal) has been designed to address these issues by providing a novel online referral pathway for clinicians seeking advice on treatment, management, and trials for rare cancer patients.

Methods: The Portal, funded by Omico and supported by BioGrid Australia, aims to complement clinical care and facilitate research through the collection of de-identified patient information. Using a novel online referral portal, cancer clinicians can submit clinical data to request test advice and interpretation, expert opinion on management/treatment, and clinical guidelines. Request responses are collated into a report by research fellows using published literature and expert opinion to guide patient management.

Results: Since late 2019, 730 patients have been referred representing over 100 histological diagnoses types. To date over 130 clinicians registered as referrers represented across Australia from regional and metropolitan centres. In addition, 64 medical oncologists, from Australia and internationally, who are considered to be experts in treating rare cancers, have provided expert input into referred cases.

Conclusion: The ARC Portal is a novel free online resource for cancer clinicians that aims to improve rare cancer treatment and provide ongoing research resource. In addition, the Portal has a broader goal of implementing expertise for rare cancer management into the Australian cancer care service and research sector which has not previously existed.


Bio to come


Oct 15 2021


2:20 pm - 2:40 pm

Local Time

  • Timezone: America/New_York
  • Date: Oct 14 2021
  • Time: 11:20 pm - 11:40 pm