In order to better understand rare cancer natural history and response to treatments, data collection including long-term follow up is urgently needed. Clinical annotation of rare cancers is usually not captured and remains a major national and international barrier. An existing database in use at a national level, and under consideration by international groups such as IRCI and GCIG, is CART-WHEEL.org, a web-based Rare Tumour Database.

CART-WHEEL.org has been developed using the BioGrid Australia infrastructure by academic researchers and cancer consumers. It is the first ethically approved portal for consumer–driven information collection for rare tumours (Bae et al IJGC 2012). Consumer input throughout development ensured that is accessible, user-friendly and relevant to consumers. Patients or their proxies can consent to the study, enter their data then download a summary of their information for their use and indicate willingness to be contacted for inclusion in a potentially suitable research study or clinical trial.

A comparison of the quality of data entered by consumers into CART-WHEEL.org, with that held in a cancer centre database (Peter MacCallum Cancer Centre) demonstrated robust ability of consumers to enter data into this online questionnaire. CART-WHEEL.org forms the basis for consumer-led rare cancer projects, which will be described. CART-WHEEL data can be linked to value-add to more formal but restricted databases. Despite selection bias CART-WHEEL.org provides an accessible way of collecting data currently unavailable to researchers or consumers and can be entered without cost, by the patient or their representative.