A new initiative is offering New Zealanders with uncommon forms of cancer the opportunity to link up with international cancer research. Breast cancer is a common disease but it has many different forms or sub-types that are not so common. A new rare tumour database will help ensure researchers have enough information about rarer tumours to facilitate research into understudied conditions.
BCAC chairperson, Libby Burgess recently attended the IMPACT Advocate Program at ANZBCTG in Australia. As part of the Advocate program, which is designed to equip consumers with knowledge and understanding of the breast cancer clinical trials research process, she attended a presentation by Associate Professor Clare Scott about the new rare tumour database – CART-WHEEL.org.
The CART-WHEEL rare tumour database was launched in 2010 to address some of the barriers facing effective research into rare types of tumours and rare sub-types of some common cancers. CART-WHEEL.org is the Centre for Analysis of Rare Tumours but also means:
C – collect information from as many people as possible
A – analyse the information about rare tumours
R – research new discoveries for rare tumours
T – treat rare tumours more effectively
With rare tumours, researchers often cannot find enough cases of each tumour type to study to make the progress needed to find better treatments and provide more information about these diseases. For this reason a website has been set up to collect standardised clinical information from people who have rare tumours.
While breast cancer is the most common cancer in women, some types of breast cancers are not that common and so they have been added to the list of rare cancers for the CART-WHEEL database. These include triple negative breast cancers and cancers that are due to a BRCA1 or BRCA2 gene mutation.
CART-WHEEL is inviting people from all over the world to submit information about their particular tumour so that researchers can develop new insights into these understudied rare tumours. People can register by filling out a privacy-protected, internet-based questionnaire which covers information ranging from each patient’s tumour type and treatment received, to aspects of family history.
Participants can exercise control over their personal details by providing consent for different uses of their entered data. This ranges from storage of their de-identified data to being contacted for participation in a relevant clinical trial.
The information will build a registry or database for patients diagnosed with rare tumours or rare subtypes of common tumours. As people world-wide are invited to submit information about their tumours CART-WHEEL.org will be able to pool together records from many different people with the same tumour type. This will help them to better understand these rare tumours and to help develop new treatments for them.
“This is a great opportunity for women with uncommon forms of breast cancer to link up with researchers who may be able to provide access to a clinical trial where novel therapies are being tested” says Libby. “Trial participants may benefit directly and they’re also playing a vital role in developing more effective treatments for future patients."
If you have, or have had, a triple negative, BRCA1/BRCA2 breast cancer, or other type of rare breast cancer, please visit the CART-WHEEL website, www.cart-wheel.org, and consider registering your details. The questionnaire will ask questions about your medical history and disease. Your pathology report will indicate what type of breast cancer you were diagnosed with if you are not sure.
The CART-WHEEL project has approval from the Human Research Ethics Committee at the Royal Melbourne Hospital in Australia.
If you have further queries please contact:
CART-WHEEL
BioGrid Australia
Tel: +61 (3) 9342 3167
Email: contact@cart-wheel.org
CART-WHEEL Principal Investigator:
Dr Clare L Scott
Physician Scientist and Medical Oncologist
MBBS PhD FRACP
To learn more about clinical trials recruiting patients in New Zealand, click here to visit BCAC’s trials webpage.
