Rare tumours are difficult to study due to the small number of cases of each tumour type diagnosed annually. All rare cancers combined account for up to 20 percent of cancers diagnosed each year and 31 percent of cancer-related deaths, however they receive only 5 percent of research funding and attention. With more than 500 types of rare tumours, a significant group of any one type will not exist at any single medical institution, leading to limited basic research and infrequent non-tailored clinical trials. CART-WHEEL.org was developed to address some of the barriers facing effective research into rare cancers with a vision of attracting international participation to amass high numbers of real cases of rare tumour types.
This rare tumour database allows consumers to enter their data in an ethically-approved and privacy-protected manner. A detailed questionnaire, designed by BioGrid in consultation with consumers, is the main application of the website. The questionnaire covers information ranging from the type of tumour and treatment received to aspects of family history and genetic testing. The information is then de-identified and stored by BioGrid.
Researchers can apply to BioGrid for access to the data for research purposes. Each request will be reviewed by a Scientific Advisory Committee and assessed on its scientific merit and feasibility before access is granted. The database is managed by BioGrid Australia who has a proven track record of providing data to researchers with ethically approved projects.
To find out more information about this project, visit cart-wheel.org