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 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.
Has data been presented and anlyzed yet from this study? Yes! At ASH 2017 (American Society of Hematology Conference):
Preliminary data presented at ASH in December, 2017 was based 279 participating patients, and included:
- Median age at diagnosis = 60
- 61% male, 39% female
- Fatigue was the most common symptom at diagnosis
- Median blood test results:
- IgM = 2750 mg/dL at diagnosis
- IgM = 3510 mg/dL at first treatment
- Hgb = 11.3 g/dL at diagnosis
- Hgb = 10.6 g/dL at first treatment
- Median time to treatment was 82 days; however, for US respondents it was 48 days, and for “rest of world”, it was 122 days.
- 40 different first-line therapeutic combinations were entered by 173 patients! The more “popular” treatments being bendamustine/rituxan, solo rituxan, and CRD (cyclophosphamide, dexamethasone, rituxan).
The actual poster, presenting more complete results, can be found here.
What do I have to do? How can I participate?
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.