The upgraded CART-WHEEL application with WhiMSICAL project is now live.
WM patients in all countries are invited to participate in this important initiative.
In Australia data provided by WhiMSICAL is needed to support applications to regulatory authorities to gain treatment funding approval under the Pharmaceutical Benefits Scheme (PBS). Currently PBS funding for WM is not available or has restrictions for available world-wide novel WM treatments such as Bendamustine and ibrutinib (IMBRUVICA)
With other countries data from WM patients can be be analysed by WhiMSICAL on a country basis for inclusion as supporting evidence to the applicable funding regulatory authorities.
What is WhiMSICAL?
WhiMSICAL is an Australia-initiated, global clinical trial inviting Waldenström’s Macroglobulinemia (WM) patients to provide their clinical data, which will help advance current knowledge and understanding of this disease. CART-WHEEL (Center for Analysis of Rare Tumors) is a database designed to address some of the barriers facing effective research into rare cancers
How does it work?
CART-WHEEL uses a privacy-protected, internet-based questionnaire. WM patients complete this questionnaire on the CART-WHEEL.org website and have control over personal details by providing consent to different uses of entered data. The questions cover areas including:
- Patient demographics
- Disease specifics: staging, chronology of symptoms, IgM levels, full blood count information, Somatic MYD88 and CXCR4 mutation status, etc.
- Treatments, how they were accessed, and treatment side-effects
- Personal and family medical history
Gathered information is stored securely and treated confidentially. It is analysed by WhiMSICAL and CART-WHEEL researchers only, to gain a better understanding of WM.
Participants can print out a summary of the questions and responses (their profile) for their records and/or review with their specialist. Profiles can be updated at any time and patients are encouraged to do this regularly, e.g. every 6 months.
How Can I take Part?
If you would like to take part, please visit the CART-WHEEL website website www.cart-wheel.org
,fill in and post the consent form and enter your information. Your data cannot be utilised for research until the consent form has been received.
THANK YOU FOR YOUR INVALUABLE HELP!!
If you have any queries about the WhiMSICAL Study, please contact:
A/Prof Judith Trotman, Dr Ibrahim Tohidi-Esfahani (Principal Investigators)
Concord Repatriation General Hospital, Concord, NSW, 2139
Phone: +61 2 9767 7243