Frequently asked questions
How do I get started?
What are the tips for completion of Question 3?
What are the tips for completion of consent form?
What are the tips for completion of Question 19 Pathology Test Results?
How frequently should I update my details in WhiMSICAL database?
What safeguards are there to protect the privacy and security of the personal medical details entered into the WhiMSICAL Database?
What questions are asked in the questionnaire and how does it work?
What do the main WhiMSICAL screenshots for WM patients look like?
Where do I go for enquiries and support?
Introductory comments on Questionnaire
It will be useful before you start the questionnaire to have:
- A copy of your pathology report with the specific name of your rare cancer/ tumor
- Information about the hospitals or medical centres where you have been treated
- The names of the treatments that you have received
If you do not have all the required information immediately available, you can update your answers to those questions at a later date.
Your information will be entered via a secure connection and cannot be seen by anyone else.
At the end of the questionnaire you will be able to print out a summary of questions and your responses for your record.
Entering the data requires WM patients to spend anywhere from half an hour to multiple hours depending upon how long they have had WM and how many treatments they have had.
It is suggested you start by entering only readily available details.
Login again later to enter details such as test results and BMB details.
The time spent in recording your details is valuable for WM research and well worth the effort.
Note throughout that CART-WHEEL uses the word “tumor” to refer to cancer of any part of the body, including blood and lymph glands
Start with easy small steps and come back later and do more
Suggested Question sequence and priorities
Start by entering details in the following Questions:
- Diagnosis ( see additional more tip details below regarding Question 3 Diagnosis)
Then complete “Consent” (See separate faq 6 below regarding Completing Consent) by selecting the tab “My Consent Details” (as shown above)
Following completion of Questions 1-3 and Consent give priority in data entry to:
- Question 9 Treatments
- Question 19.1 Symptoms
- Question 19.5 Pathology test results particularly your IgM and haemoglobin details at diagnosis, at start and completion of each treatment course and your most current data
Then as it suits you later, slowly work through the rest of the Questionnaire
Question 3 completion is important as it enables CART-WHEEL to identify Waldenström’s Macroglobulinemia patients and to generate the specifically WM applicable Question 19 Pathology Test Results.
The example below illustrates how to complete Question 3.
Importance of consent form completion (Without this consent form, the information provided cannot be used)
The privacy and confidentiality of your patient details are safeguarded by the comprehensive CART-WHEEL Consent process.
Completing your Consent Form confirms your permission for use of the entered information for the purposes of research.
An important requirement of the Human Research Ethics Committee that protects your rights is that you formally confirm that you understand the purpose of the study.
The importance of Consent and details about the WhiMSICAL database workings are provided in the Participant Information covering:
- Participants access to Database via the website
- Ethical and scientific standards for research access to data
- Ethical guidelines
- BioGrid Australia data sharing technology company providing secure web-based infrastructure protecting both privacy and intellectual property
- Levels of consent for use of data
- How privacy is protected
- Benefits, risks, further information, problems, voluntary participation and consent withdrawal
Guidance on Completion of the Consent Form
- CART-WHEEL uses the word “tumor” to refer to cancer of any part of the body, including blood and lymph glands
- Choose Online option for Consent form as it is easier and quicker
- Consent to all 5 options to ensure the maximum benefit for research purposes from data provided
- The sections of the consent form regarding tissue sample specimens and blood samples stored in tissue banks are not relevant to the WhiMSICAL CART-WHEEL Database
- In “Project Name” include details such as that of applicable Clinical Trial, otherwise leave “blank”
- Complete the Consent without delay so that the details entered are immediately available for research
- For assistance and any clarification send message to email@example.com
Submit the Consent Form to CART-WHEEL online
Once you are logged into the Questionnaire, select ‘My Consent details’ in the top right of your screen. Select the ‘Add Consent’ button.
This will provide on screen the relevant information to enable you to consent to your participation in CART-WHEEL.
6. What safeguards are there to protect the privacy and security of the personal medical details entered into the WhiMSICAL Database?
CART-Wheel data management is undertaken by BioGrid Australia. Privacy and data security are described in detail at:
Principal features of the data security are:
- Data is stored on secure servers that can only be accessed by authorised BioGrid Australia administrative staff.
- Only authorised researchers with approval from an accredited Human Research Ethics Committee for their research study are permitted to access coded (i.e. with personal identifying information removed) data from CART-Wheel by using BioGrid-supplied authentication details.
- Participant identifiers are stored separately (on separate server) from clinical information and are inaccessible to researchers.
- To ensure privacy and security of data, regular monitoring and management of systems, updating of security patches and external audits take place.
- BioGrid Australia complies with and exceeds the International Standard ISO 27005 regarding risk assessment of data security.
If you wish to be further assured on data security arrangements, please contact CART-WHEEL directly at firstname.lastname@example.org .
7. What questions are asked and how does the questionnaire work
To give you a feeling for what you are being asked and how the questionnaire works a demonstration is provided by CART-WHEEL at www.cart-wheel.org/page/32/demonstration-of-patient-questionnaire
A list of the 20 Questions in the Questionnaire is shown the Content below. Screenshots for each question are provided in the link above. The Quality of Life Questionnaire is included in Question 20.
8. What do the main WhiMSICAL screenshots for WM patients look like when completed?
Examples are provided for completed screens covering Diagnosis, Treatments and Pathology tests and graphs.
Send an email message as follows for:
- General information – IWMF and WMozzies: email@example.com
- Support from WM patients using WhiMSICAL: firstname.lastname@example.org
- Technical support and user problems: WhiMSICAL CART-WHEEL: email@example.com
- Forgotten password https://apps.biogrid.org.au/cart-wheel/gui/Login/forgotten.aspx