Building an online network of rare cancers clinicians and researchers to improve outcomes for patients – introducing the COSA-endorsed Australian Rare Cancer Portal
Australians diagnosed with rare or less common cancers and their doctors face extra challenges compared to those with more common cancers. These challenges include longer diagnosis times and difficulty accessing cancer specialists, molecular testing or specific treatments, as well as difficulties identifying information and support networks. To address this, the Australian Rare Cancer Portal (ARC Portal) has been established as an online platform to all Australian clinicians who are managing a patient with a rare cancers. 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. Patients referred through the portal also consent toward use of their clinical data, and optionally biospecimens, for research. 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. This important initiative has recently been endorsed by COSA.
The Australian Rare Cancer Portal is led by Professors Clare Scott and David Goldstein funded by the Australian Cancer Genomics Medicine Centre (now known as Omico) and is managed by BioGrid Australia.
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