ARC Portal
The Australian Rare Cancer (ARC) Portal addresses the inequity of accessing rare cancer expertise across Australia.
Principal investigators
Professor Clare Scott and Professor David Goldstein
Host organisation(s)
The Australian Genomic Cancer Medicine Centre, now known as Omico
The Australian Rare Cancer (ARC) Portal is an online referral service that aims to improve outcomes and access to research for Australians diagnosed with a rare cancer.
People with rare cancers and their doctors face extra challenges compared to those with more common cancers.
In a population the size of Australia’s dispersed over such a large continent, it can be challenging for patients with rare cancers, and the doctors who treat them, to find information on how to treat their condition or access specialists who have the knowledge of their particular cancer and can treat them.
Access to molecular testing or specific treatments may not be available or when available may not be reimbursed for their rare cancer types, and access to clinical trials or research programs is more likely to be limited.
Established in 2019 with a grant from the Australian Federal Government, the ARC Portal was conceived as an innovative way to help boost the ability of doctors to find rare cancer testing, clinical trials, and specialist expertise – all in one location.
This is particularly valuable in rural, regional and remote areas, where the closest specialist expertise in a specific rare cancer could be thousands of kilometres away.
There is nothing like ARC Portal outside Australia because our challenges are very specific – a small population over a large area, making rare cancer treatment and research very challenging
Dr Damien Kee
Medical Oncologist, ARC Portal
Connecting researchers with patients
Another important aspect of the value of the ARC Portal is the ability to connect researchers with patients. Typically, a rare cancer is found in fewer than 6 people per 100,000 per year in Australia – or fewer than around 1500 people per year in total. This makes it challenging for researchers to find sufficient participants to ensure research studies are feasible.
The ARC Portal provides a platform for researchers to find patients who wish to participate in studies and trials, and in doing so enables the growth of knowledge about rare cancers that will help Australians with rare cancers and medical practitioners into the future.
By aggregating data about rare cancers in the ARC Portal, researchers can also identify patterns in treatments and build knowledge about treatment outcomes. The fact that this data is prospectively collected, potentially even before a study is designed and commenced, means the risk of bias is reduced.
BioGrid provides and maintains the online platform for ARC Portal, including the website, web application and database, and the overarching governance and data security, enabling clinicians to connect with each other. BioGrid also facilitates the collection of clinical information by researchers from consenting participating patients.
How does BioGrid do it?
All the patient data is stored by BioGrid, ensuring that patient data is aggregated and de-identified, and stored securely for future use.
BioGrid also enables patients to give researchers access to their tissue and blood samples, enabling future research using these valuable samples. This is an important element of the ARC Portal’s contribution, as research on rare cancers can be stymied by the relative infrequency of the cancer’s occurrence, sometimes pushing out collection timelines beyond funding timeframes.