WhiMSICAL Frequently Asked Questions


 .

Why should I bother completing the consent form?

The privacy and confidentiality of your patient details are safeguarded by the comprehensive CART-WHEEL Consent process. 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

See also tips to assist completion of the consent form.   

 

What are the tips for completion of consent form?

  • 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
  • CART-WHEEL uses the word “tumor” to refer to cancer of any part of the body, including blood and lymph glands
  • 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
  • Complete the Consent without delay so that the details entered are immediately available for research
  • For assistance and any clarification send message to whimsical@iwmf.com 

 

What safeguards to protect the privacy and security of the personal medical details entered into the WhiMSICAL Database? 

Comprehensive information on this important subject is provided by CART-WHEEL on their website at  https://www.cart-wheel.org/page/43/data-security-of-cart-wheel-database .

If you wish to be further assured on data security arrangements, please contact CART-WHEEL directly at contact@cart-wheel.org .

  

What are the tips for completion of Question 19 Pathology Test Results?

  • Test results are entered in the units provided in the pathology report regardless of the country. The units for the applicable country are selected using a drop-down menu
  • Entry of those pathology test results around the time of diagnosis, before and after treatment and the most recent are the most important if it is burdensome to enter all. 
  • Don’t worry, if you don’t have all the information handy, just fill in whatever data you do have.
  • Come back later to enter additional results when you have accessed the detail from your treatment centre   
  • Note Abnormal or Paraprotein Band (M-spike) in WhiMSICAL is called Serum Paraprotein Level in Question 19.
  • Note Beta 2-microglobulin is not done as frequently as others.  It is often part of a panel used to determine prognosis and treatment. Beta 2 globulin is very different to Beta 2-microglobulin.

Where do I go for enquiries and support?

 Send an email message as follows for:

 

How frequently should I update my details in WhiMSICAL database?

After the initial completion of the Questionnaire it is sufficient to do updates yearly or when there are significant changes to your medical condition or treatment

Entering new pathology test results in question 19 is likely to be the most frequent part for updating.  The bonus for entering in the latest results into WhiMSICAL is that you immediately have graph generated showing the trend lines for each of the tests.

How many are participating in WhiMSICAL database?

The WhiMSICAL database has 228 members as at 4 September 2017