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The Australian Rare Cancer (ARC) Portal addresses the inequity of accessing rare cancer expertise across Australia.
Professor Clare Scott and Professor David Goldstein
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 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.
All the patient data is stored by BioGrid, ensuring that patient data is aggregated and de-identified, and stored securely for future use.
How does BioGrid do it?
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.How does BioGrid do it?
ARC Portal effectively limits the tyranny of distance that has historically impacted rare cancer treatment and knowledge, making expertise about rare cancers available to patients and clinicians anywhere in Australia in a timely manner.
Professor Clare Scott is the Joint Division Head of the Clinical Translation Centre and Head of the Ovarian and Rare Cancers Laboratory at the Walter and Eliza Hall Institute of Medical Research (WEHI). Dr Scott is the Professor of Gynaecological Cancer at The University of Melbourne and is a Medical Oncologist at the Peter MacCallum Cancer Centre, Royal Melbourne and Royal Women's Hospitals. She has 20 years’ experience in treating breast and ovarian cancer and in clinical cancer genetics in Familial Cancer Clinics. Professor Scott has been Principal Investigator for more than ten cancer clinical trials of targeted therapy. In the laboratory, Professor Scott has developed ovarian and other rare cancer pre-clinical models and is using genomics to study targeted drug combinations to combat drug resistance.
Professor Goldstein is a conjoint clinical professor. He has been involved in a variety of clinical research projects ranging from laboratory basic science to novel therapeutics trials to psychosocial aspects of Cancer care. He has been PI of a number of NHMRC and Cancer Australia funded therapeutic trials including both investigator initiated and as Australian PI for multinational studies. He has also been involved with psychosocial and cross cultural/CALD research for many years. His clinical interests are treatment of GI malignancies including pancreas cancer, colorectal cancer, anal carcinoma, hepatobilary and upper GI malignancy and renal cell carcinoma and lymphoma. He has been a Chief or Principal Investigator on $26,000,000 peer reviewed funded grants .
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