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New Global Patient Database for WM – Your Help Is Needed!

May 12, 2017

Why Join WhiMSICAL?

If you want to “pay it forward” and help current and future WM patients around the world, then join WhiMSICAL!

What is WhiMSICAL?

WhiMSICAL is the first patient- and medical researcher-led global patient database for Waldenstrom’s macroglobulinemia. Developed first for use in Australia, it is now being rolled out globally, and uses the same analytical framework used for many other rare diseases.

What will WhiMSICAL do?

WhiMSICAL will capture patient data for WM patients globally.

Doesn’t something like this already exist?

The short answer is no. Efforts to create a global database have been conducted by the IWMF and WMUK in the past, but they have not been as extensive or as scientifically valid as WhiMSICAL promises to be. Also, while major medical centers have records of their patients’ medical histories, they do not necessarily share those data with each other. WhiMSICAL is the only database thus far that collects patient data from around the world in one centralized location.

What is the value of a global patient database?

Have you heard the term big data? Big data analytics is the process of examining large and varied data sets – i.e., big data – to uncover hidden patterns, unknown correlations, market trends, customer preferences and other useful information that can help organizations make more-informed decisions. That’s where WhiMSICAL is heading. First, we need to get a sufficient number of WM patients to enter their data. Then we need to compare it to information at medical institutions to make sure they correlate. Then, we can use those data to inform our understanding and to help frame further research needs for insights into WM.

What do I have to do?

You can sign up to participate in WhiMSICAL at www.cart-wheel.org.

(For more information about WhiMSICAL and how to sign up to participate, go to: www.wmozzies.com.au/index.php/whimsical.

Once you are registered, start filling in your personal data for WM. You will need information such as:

  • Your past blood test results, e.g., IgM values, hemoglobin, serum paraprotein, M-protein, neutrophils, platelets, Beta 2 microglobulins, among others.
  • Your WM symptoms and past treatments.
  • Your personal and family medical history.

And don’t worry, if you don’t have all the information handy, just fill in what data you do have for each time you had blood tests or treatments.  It is suggested that you start with the data from your date of diagnosis, at the completion of each treatment course you’ve had (that is, after all cycles of a course are completed), and your most current data, and then work your way back, adding additional data as you have time to do so.

How long is this going to take?

That depends upon you and how long you’ve had WM, what treatments you’ve received, the tests performed, etc. You should probably expect to spend between thirty minutes and three hours. Relax, though, as you don’t have to do it all in one sitting! You can start and stop and go back again to where you left off.

What if I've previously participated in the IWMF Patient Database? Will that still be available?

Any data you entered into the IWMF Patient Database will have to be re-entered into the WhiMSICAL database. The advantage of the new database is that it is being driven by both patients and researchers, and will be considered more scientifically valid from a research perspective.

The IWMF is encouraging its members to participate in the WhiMSICAL study database. During the transition from the IWMF Patient Database to WhiMSICAL, the original PDB will remain active and available; however, no further maintenance or development will occur, and new members will not be enrolled.

Please join us in moving forward towards "big data" collection for Waldenstrom's macroglobulinemia on behalf of patients, caregivers, scientists, researchers, and clinicians around the world!

Why should I do this again?

If you appreciate and have benefitted from the greater knowledge that we have now about WM and want to have better treatments with fewer side effects for yourself and future WMers, then you need to do this. It will help us get closer to a cure and benefit WMers and WM researchers across the globe. Consider it your personal scientific contribution to conquering WM. As a bonus, you’ll be able to track your own personal pathology test results in tabular and chart/graph fashion.

If you have any queries about WhiMSICAL, please contact whimsical@iwmf.com.

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