Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2026

The Australian Rare Cancer Portal: Service outcomes following national recommencement 2026 (146562)

Maryanne Dr Akkerman 1 , Cassie Dr Beaven 1 , Nicole Dr Pringle 1 , Stephanie Dr Wakeling 1 , Sebastian Dr Kang 1 , Cassie Dr Turner 1 , Betty Dr Zhang 1 , Chloe Dr Georgiou 1 , Jamie Mr Flynn 1 2 , Javier Mr Haurat 1 2 , Bryan A/Prof Chan 1 , Melvin Dr Chin 1 , Damien Dr Kee 1 3 4 , David Prof Goldstein 1 5 , Clare Prof Scott 1 3 4
  1. Australian Rare Cancer Portal, Royal Melbourne Hospital, Melbourne, Victoria
  2. Biogrid Australia, Royal Melbourne Hospital, Victoria
  3. Department of Medical Oncology, Peter MacCallum Cancer Centre, Melbourne, Victoria
  4. Walter and Eliza Institute of Medical Research, Parkville, Victoria
  5. Department of Medical Oncology, Prince of Wales Hospital, Randwick, NSW

Aims

Rare cancers account for approximately 18% of all cancer diagnoses but 30% of cancer-related deaths and are associated with limited evidence, restricted access to subspecialty expertise and inequitable access to novel therapies. The Australian Rare Cancer (ARC) Portal recommenced as a national clinician-facing referral service in September 2025. We describe the characteristics and early performance of the relaunched service up to June 2026.

Methods

Data collected included referral source, geographic location, report turnaround time, report components (including expert opinion), and clinician-reported impact. Descriptive statistics were used to summarise service activity.

Results

We received 145 referrals from 86 referring clinicians, including 26 new referrers. Detailed report-level data were available for 134. The median report turnaround time was 28 days. Queensland had the largest proportion (30.4%), followed by Victoria (24.4%), NSW (23.0%), Tasmania (9.6%), WA (6.7%), NT (3.7%) and SA (2.2%); overall, 40.3% of referrals originated from regional, rural or remote Australia (28% of Australians live in non-metropolitan areas1). Of the reports analysed, 88 (65.7%) related to ultra-rare cancers (incidence <1 per 100,000 population), and 85 (63.4%) incorporated expert clinical opinion. In the last six months 43/101(41.6%) had clinical trials identified, 68/101(67%) had molecular profiling interpreted. Twenty-nine had drug access identified. Among 22 clinician survey respondents, 95.4% agreed recommendations were timely and informative, and 55.6% reported implementing recommendations in patient management.

Conclusions

The ARC Portal improves equitable access to rare cancer expertise by providing evidence-informed recommendations, expert clinical input, molecular interpretation, and advice regarding clinical trials and treatment access pathways. Early findings demonstrate broad national utilisation, including substantial engagement from regional, rural and remote areas, and support the feasibility of delivering timely decision support for clinicians managing rare and ultra-rare cancers. Ongoing evaluation will include follow-up on compassionate access and the use of immune-checkpoint inhibitors in rare cancers.

  1. Australian Institute of Health and Welfare. Rural and remote health [Internet]. Canberra: AIHW; 2025 [cited 2026 Aug 7]. Available from: AIHW Rural and remote health