New Melbourne-based website to link patients affected with rare tumours

Patients suffering from rare tumours can now be linked up with clinical trials and research following the launch of a new web site in Melbourne.

According to CART-WHEEL.org, the Centre of Analysis of Rare Tumours, it is the first international, ethically-approved web portal responsible for coordinating patient information, research studies and clinical trials.

Professor Sir Gustav Nossal, a world leader in public health policy, who launched the web site, said people from around the world can submit information about their rare tumours to enable researchers to develop new insights into under-studied rare tumours.

This initiative is a wheel of hope for groups of people who have long missed out, only receiving 5 per cent of research funding and attention, he said.

This is despite the fact that when all the different kinds of rare tumours are taken together, the make up 20 per cent of all cancers diagnosed, said Prof Nossal.

The web site is also inspired by Cynthia Pollak who started a registry of patients with hemangioendothelioma.

Her son Danny had been diagnosed with the rare vascular cancer but there was little data on the disease.

Ms Pollak took it upon herself to collect data from more than 200 voluntary international participants but the task became too large and she turned to the cancer research community for assistance.

The challenge was accepted by Dr Clare Scott, principal investigator of CART-WHEEL.org who is also a medical oncologist, who has been leading the development of the site in conjunction with consumers from Cancer Voices Australia.

The web site will streamline the process required for patients to become involved in clinical trials, said Dr Scott.

Many patients with rare tumours have few treatment choices, Dr Scott said.

This web site provides a new way of linking patients into the system of research and clinical trials, increasing the number of patients available for specialized research.