As the year draws to an end, the ARC Portal, would like to acknowledge and thank all the people that have contributed to making 2022 another amazing year.
More than 1100 patients since 2019
Over 11 ongoing national collaborative research programs
Increased impact for regional patients
Since we started in 2019, the Portal has been able to help over 1100 rare cancer patients referred to the Portal from across Australia for sub-specialist opinions; identification of relevant guidelines or literature; molecular testing advice or interpretation; other requests; and enrolment into research programs.
These patients have actively contributed to the ongoing development of a national rare cancer biobank and ongoing research programmes via their contribution of de-identified clinical data to the WEHI Stafford Fox Rare Cancer Program. This enrolment has led to the development of several collaborative rare cancer research projects that would have been more challenging or infeasible to undertake with existing traditional accrual strategies lacking a national approach. These projects include:
- Epithelioid hemangioendothelioma
- Fibrolamellar hepatocellular carcinoma
- Thymoma and thymic carcinoma
- Penile squamous cell carcinoma
- Germ cell tumours
- Adrenocortical cancer
- Uveal melanoma
- Multiple primary cancers
- Low grade serous and clear cell ovarian carcinoma
- Uterine carcinosarcoma, leiomyosarcoma, high grade serous carcinoma
2022 also saw the Portal increase its impact for rural/regional patients thanks to the collaboration with the REVITILISE network to provide the online infrastructure which will enable a new regional Victorian multidisciplinary meeting for rare urological tumours.
All these achievements couldn’t have occurred without the efforts of referring clinicians; expert clinicians who provide input and advice; the patients who generously agree to be involved in the Portal; and our research collaborators and supporters at: Omico, Rare Cancers Australia, COSA, AGITG, ANZGOG, and ANZUP.