Thursday, April 15th, 2010

The world’s first website dedicated to linking people who have rare tumours into clinical trials and research was launched today in Melbourne, offering a ‘wheel of hope’ for people with rare cancers., the Centre of Analysis of Rare Tumours, is the first international, ethically-approved web portal coordinating patient information, research studies and clinical trials.

Professor Sir Gustav Nossal, a world-leader in public health policy, launched the initiative today at the Walter and Eliza Hall Institute in Parkville.

“From today people from all over the world can submit information about their rare tumours so that researchers can develop new insights into understudied rare tumours,” Professor Nossal said.

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

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

The website had its origins with Cynthia Pollak who started a registry of patients with hemangioendothelioma. Cynthia’s son Danny had been diagnosed with this rare vascular cancer but there was little information on the disease. She quickly gathered data from more than 200 voluntary international participants but the task became too large and Cynthia turned to the cancer research community for help.

Dr Clare Scott, principal investigator,, and medical oncologist, took up the challenge and has been leading the development of the website in conjunction with consumers from Cancer Voices Australia. The website has been dedicated to Cynthia’s son, Danny.

Dr Scott, the Cory Fellow at the Walter and Eliza Hall Institute, said the website would streamline the process required for patients to become involved in clinical trials.

“Many patients with rare tumours have few treatment choices,” Dr Scott said. “This website provides a new way of linking patients into the system of research and clinical trials, increasing the number of patients available for specialised research.

“The ultimate goal for CART-WHEEL is to gather enough entries over time to make clinical trials for different types of rare tumours a possibility,” she added.

Debbie Alleblas, whose daughter Elisa has a rare form of gastrointestinal stromal tumour (GIST), has been actively involved in searching for the best treatments for her daughter. “This is a life and death situation and we rely on having the very best information available for decision-making,” Mrs Alleblas said. “CART-WHEEL is designed to address the urgent need for more detailed study of rare tumours.”

The website is also for patients with common tumours, such as bowel, lung, prostate and breast cancer, who may have some information about the genes underlying their cancer, Dr Scott said.

Phillip Holian has been fighting bowel cancer for 10 years and, after trying chemotherapy and surgery following the return of his cancer, he has more recently had his tumour tested for a number of genes as part of clinical trial treatments. Mr Holian said that trying to find a trial that was right for his tumour type was a major challenge. He recognises that CART-WHEEL provides the potential for patients and their doctors to find a broader range of treatments via clinical trials.

Dr Scott said that the involvement of consumers in the project meant the CART-WHEEL website was easier to use and to understand.

“Consumers are able to register their interest in research. Individual patient consent is held by BioGrid with flexible levels of involvement allowing patient contact for potential participation in ethically-approved research studies and clinical trials,” she said.

The web portal has been developed by BioGrid Australia using sophisticated infrastructure. BioGrid Australia, a non-profit organisation uses a web of computers to anonymously combine patient information, enabling researchers to share information while protecting the privacy of patients and maintaining security with its proven track record of generating data for researchers.

Funded through a consumer grant from the Victorian Cancer Agency, the initiative has been approved by the Melbourne Human Research Ethics Committee.

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John Myers

P: +61 3 9818 6339


cancer, tumours, biogrid



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