Dialog Box

Rare Cancer Research

Medical research is important for improving the outcomes for all patients with cancer. 

To understand how any type of cancer occurs, how it spreads and how best to treat it, a large group of patients usually needs to be recruited. Researchers aim to collect as much information as possible so that their findings are reliable.

Where a cancer is rare, it can be very difficult to recruit enough patients for research and this has resulted in more limited understanding and innovations for these cancers. 

One way of addressing this problem is for research groups across Australia and the world to pool their information. The Australian Rare Cancer Portal has links with national and international research partners and is working to make research into rare cancers more achievable.

What is the Stafford Fox Rare Cancer Program?

Research into rare cancers is an important part of improving treatment and outcomes for patients. To contribute towards this research effort, the ARC Portal is part of the WEHI Stafford Fox Rare Cancer Program. 

This Program is based at the Walter and Eliza Hall Institute of Medical Research (WEHI) in Melbourne. The Program collects clinical information which is de-identified (which means your name and any other details which could identify you are removed) and held in a secure database. Once there is enough information on any particular type of rare cancer, it can be analysed to improve our understanding of that cancer.

If you are referred to the ARC Portal, you will be asked to sign a form giving consent for your information to be included in this research Program. You are also able to specify whether you consent to provide samples of saliva, blood and tumour tissue for research purposes. Providing these samples is an optional part of your referral to the Rare Cancer Portal. More details about the Program can be found on the consent form, which will be provided to you by your referring cancer specialist.

The WEHI SFRCP has been approved by the Melbourne Health Human Research and Ethics Committee (HREC/15/MH/396).