www.CART-WHEEL.org is interested in collecting data from patients affected by rare cancers including rare molecular subtypes of common tumours.
According to RARECARE.eu data (Gatta et al Eur J Cancer 2011), it is reasonable to define all cancer patients as having a rare cancer (<6 per 100,000 incidence) or less common cancer (pragmatically 6-12 per 100,000 incidence), UNLESS they have the common histologic subtype of the following common cancers
- adenocarcinoma of colon, rectum, breast, stomach, lung or prostate;
- squamous carcinoma of the lung,
- transitional cell carcinoma of the bladder or
- and some patients in the common categories may also be suitable if they have particular associations, e.g. molecular or family history or ancestry
The CART-WHEEL rare tumour website (Bae et al IJGC 2012) was developed in order to address barriers to effective rare tumour research, including rare molecular subtypes of common tumours. Small patient numbers lead to difficulty in accruing adequately powered rare tumour cohorts for studies ranging from treatment efficacy to the molecular pathogenesis.
A pilot study of data entered into CART-WHEEL.org by cancer consumers confirms that consumers can enter medical data accurately when using a well-designed online questionnaire (publication pending).
The CART-WHEEL online questionnaire has been put together by clinicians and researchers with a help of cancer consumers and covers information ranging from tumor type and treatments received, to aspects of relevant social and family history.
Participants have control over their personal details by providing consent to different uses of entered data.
Click on the above link to access demonstration and example documentation pertaining to the questionnaire and online consent.
Click on the above link to access further information available to participants about participating in CART-Wheel.
If you are interested in accessing data for an ethically approved study, please contact us at firstname.lastname@example.org.