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Referrals FAQs

What is the Australian Rare Cancer (ARC) Portal?

The Australian Rare Cancer (ARC) Portal is an online platform and clinical referral service providing a national approach to rare cancer care and research.

By referring your patient with a rare cancer (including patients with an uncommon or rare molecular variant of a common cancer), the ARC Portal acts a single point of contact to assist treating clinicians in:

  • Facilitating clinical advice from our network of national and international tumour stream experts 
  • Identify research opportunities or clinical trial options
  • Advise on molecular or germline testing or assist in the interpretation of existing molecular reports

The ARC Portal also serves as a national platform to collate rare cancer clinical data and biospecimen sample accrual through its shared infrastructure with the Walter and Eliza Hall Institute of Medical Research (WEHI) Stafford-Fox Rare Cancer Program, a research collaboration focused on understanding the biology of rare cancers.

The ARC Portal is supported by BioGrid Australia with funding via the Australian Genomic Cancer Medicine Centre, now known as Omico. Our team is led by Prof. Clare Scott, Medical Oncologist at Peter MacCallum Cancer Centre and the Walter and Eliza Hall Institute, a leading expert in rare cancer research.

Who can refer to the ARC Portal?

A patient must be referred to the ARC Portal by their cancer specialist (usually their medical oncologist, radiation oncologist or cancer surgeon).

Referrers are required to be a registered clinician in Australia with a valid Medicare provider number. Registered cancer specialists can assign delegates to act on their behalf.

Is my patient eligible to be referred to the ARC Portal?

We welcome referrals for any patient with a rare cancer diagnosis who is an Australian resident with a valid Medicare number. A rare cancer has an incidence of less than 6 per 100 000 per year.  Click here to view a list of rare cancers.

We also accept referrals for patients with an uncommon or rare molecular variant of a common cancer.

A referral to the ARC Portal may be made at any timepoint including at initial diagnosis, upon relapse or development of advanced disease.

We encourage early referrals as the ARC Portal will facilitate data collection on the natural history of rare cancers. Patients interested in donating fresh tumour tissue for research purposes may also be referred to the portal prior to any planned surgery or biopsy.  

How long does the ARC Portal referral process take?

The ARC Portal is an online referral system designed to provide timely and accurate access to initial clinical support, guidelines and research for patients diagnosed with a rare cancer.

From the time of referral, we estimate an initial report will be issued back to the referring clinician within 2 weeks. Additional opinions requiring review by external specialists may take longer.

Please contact us at enquiries@arcportal.org.au if you have further questions or would like to know more.

How does my patient consent to being involved in the Portal?

As part of the registration process, your patient must CONSENT to participating in the ARC Portal by signing a Participant Information and Consent Form or using our online consent process.

You can access a paper version of the consent form here or in the Portal during the patient registration process. A signed copy of the consent form will need to be uploaded to the patients registration page on the Portal.

An online version of the consent form can be sent to patients to electronically sign via SMS or email as part of the registration process.  The signed consent form is automatically uploaded to the patients registration page on the Portal.

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Register and refer a patient to the ARC portal to improve the quality of care and outcomes of patients with a rare cancer diagnosis

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