CART-Wheel and rare cancer research – how does one relate to the other?
Each letter stands for how the unique CART-Wheel initiative empowers patients and families to utilise and share information about their tumours and conditions to inform research and patient outcomes across the globe.
The meaning behind CART-Wheel is the Center for Analysis of Rare Tumours, but it also outlines the process undertaken as part of the Center’s work:
C ollect information from many people
A nalyse the information about rare tumours
R esearch new discoveries for rare tumours
T reat rare tumours more effectively
CART-Wheel is an online portal powered by patients and families, for patients and families.
“The project was actually initiated by the mother of a rare cancer patient, Cynthia Pollak,” Dr Damien Kee, CART-Wheel Research Fellow explained.
“Cynthia’s son, Danny was diagnosed with a rare vascular cancer known as Hemangioendothelioma in 2004. Like many rare cancer patients, she struggled to find information, treatment options and support for Danny so she embarked on her own research.
“She used the internet to begin searching for and collecting stories of patients with the same diagnosis from across the globe. She ended up amassing around 300 stories and formed one of the first consumer-led rare cancer registries in the world.”
Cynthia then approached leading Australian Oncologist, Prof Clare Scott about her work and findings and so CART-Wheel was born.
“CART-Wheel is a patient-facing registry for rare cancers. It is designed to collect information directly from people who live with rare cancers and tumours,” Dr Kee continued.
“Effective research into rare tumours is difficult due to the small numbers of each type of tumour diagnosed each year. Usually we need to study large numbers of cases in order to identify patterns that tell us important information about how a tumour behaves or what kind of treatments work best.
“By creating a registry accessible to patients on the internet we can bring together data provided by individuals from all over the world, giving researchers access to a greater wealth of information.”
Any patient with a rare or less common tumour type or an inherited risk for cancer can contribute to CART-Wheel by completing an online, privacy protected questionnaire about their condition. As part of this, they can opt to make their information available to researchers globally, choose to de-identify details, and can make their submission accessible to their Oncologist as well as the registry’s findings in order to enhance their care.
CART-Wheel links patients with clinical trials as well, helping patients to find researchers, and researchers to find patients worldwide.
The team also partners with consumer groups to enhance research efforts and improve patient outcomes. An example of this is the WhiMSICAL study, which aims to better understand Waldenström Macroglobulinemia (WM), a rare type of slow-growing, non-Hodgkin lymphoma.
“We have teamed up with the WM community globally for this project - through the International Waldenström's Macroglobulinemia Foundation (IWMF) and through WMozzies in Australia,” Dr Kee said.
“These types of collaborations are assisting all groups involved, and clinicians and patients worldwide, to better understand the nature of specific rare diseases and the patients’ response to currently used treatments in Australia and internationally by generating data through CART-WHEEL questionnaire.”
All of this work comes down to the involvement of patients and families, and this remains the focus of CART-Wheel.
“Without the engagement of patients and families a lot of this wouldn’t be possible. They’re helping to inform future treatments and they’re helping to put together information that wouldn’t otherwise be available. We are grateful to have so many involved as partners in research,” Dr Kee shared.