39O - Four years and 1400+ patient referrals: Achievements of the Australian Rare Cancer Portal

Background

Patients diagnosed with rare cancers (RC, incidence < 6/100,000 person-years) face challenges in accessing RC care and clinical trials. Clinicians are often uncertain how to seek expert guidance. RC trials and research programs have difficulty recruiting patients. These complexities are compounded in Australia where vast geographic distance is a major barrier to accessing sub-specialist expertise. The Australian Rare Cancer (ARC) Portal (www.arcportal.org.au) was established in 2019 to address these challenges.

Methods

ARC Portal is an online service that provides clinicians with expert guidance, advice on molecular testing/interpretation and identification of drug access options and trials. Under the supervision of senior oncologists, fellows perform a literature review and search for drug access options. In complex cases, (inter)national experts are contacted for commentary. Clinicians receive reports within 2-3 weeks of referral and are connected directly to relevant trial investigators and drug access program managers. Patients are also invited to participate in research.

Results

From April 2019 to June 2023, 1463 patients were referred. 45% lived outside major metropolitan areas. 73.8% had metastatic/advanced disease. 151 unique tumour types were referred, of which >30 were ultra-rare (incidence ≤1/1,000,000). 84.2% consented to clinical history and biospecimen collection for research, which, together with ARC Portal reports, creates a valuable knowledge base and virtual biobank. Treating specialists have been networked to the national RC expert most appropriate for that case, and where needed, patients have been provided with supporting evidence for treatment with non-approved/non-reimbursed therapies, resulting in compassionate drug access. To date, six fellows have graduated from ARC Portal, contributing to national RC expertise. Collaborations with national expert tumour groups, consumer organisations (e.g. Rare Cancers Australia) and regional trial alliances are ongoing.

Conclusions

Through a unique, multi-faceted approach linking patients, clinicians, clinical trials, industry and professional bodies, the ARC Portal addresses disparities inherent in RC care and contributes to research.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

Australian Rare Cancer Portal.

Funding

The ARC Portal is funded by an Australian Federal Government grant through the Australian Genomic Cancer Medicine Centre, now known as Omico.

Disclosure

All authors have declared no conflicts of interest.