Building an online network of rare cancer clinicians and researchers to improve outcomes for patients
Although there have been considerable improvements in cancer outcomes over the last 20 years, these benefits have been less evident for patients diagnosed with rare cancers. In fact, an Australian diagnosed with a rare or less common cancer remains almost twice as likely to die from their disease as one diagnosed with a more common cancer.
Facilitating access to rare cancer clinical expertise, as well as enhancing participation in rare cancer research and clinical trials, is an essential part of improving outcomes for these patients. However, linking patients with rare cancers with appropriate clinical experts, trialists and researchers is challenging – especially in a country as large and sparsely populated as Australia.
In order to address the ‘tyranny of distance’ alongside the wish of many patients with cancer to receive treatment closer to home, the Australian Rare Cancer Portal (ARC Portal) has been established as an online platform. Clinicians can refer patients to the ARC Portal to obtain streamlined access to rare cancer management guidelines, advice from a panel of Australian and international rare cancer specialists, guidance on molecular testing or interpretation of results and help identifying clinical trials.
The ARC Portal also allows patients to give consent for use of their clinical data, and optionally biospecimens, for research. This is particularly important as real-world data and basic research into rare cancers are challenging to accrue to, meaning that rare cancer research is often under-powered, more difficult for researchers to undertake, or simply infeasible.
By providing a nationwide approach to rare cancer patient and sample accrual, the ARC Portal aims to more rapidly collect clinically annotated rare cancer biospecimens that Australian researchers can access for ethically approved projects.
The AGITG has a long history of advancing rare cancer treatments and many members currently have an active role as part of the growing ARC Portal expert pool. Members are invited to refer their own rare cancer patients, either for advice, or to collaborate in collecting prospective and retrospective rare cancer outcome data that when pooled together can help inform future treatment decisions. Researchers are also invited to contact the ARC Portal to discuss any specific projects the ARC Portal can assist with.
“Improving outcomes for rare cancers is a numbers problem,” says ARC Portal co-lead, Professor David Goldstein, “and only through collaborations can we expect to generate high-quality data necessary to improve these patients’ outcomes.”
The Australian Rare Cancer Portal is led by Professors Clare Scott and David Goldstein funded by the Australian Cancer Genomics Medicine Centre and managed by BioGrid Australia.