WhiMSICAL, the first patient and medical researcher-led global patient database for WM, is available for use, and the IWMF encourages everyone to participate!
In order for the researchers to make a serious analysis of our data that we enter into the system, and then present their findings to clinicians and researchers at the next ASH (American Society of Hematology) conference, they need to have a total of 200 (or more) patients with completed consent and data entered into the WhiMSICAL database by July 1.
We need several more patients in the database for them to meet that goal! Your time and involvement are critical to this effort, as it could significantly enhance the understanding of WM and help frame further researcher needs for insights into WM.
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, 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 or have a limited window of time to enter your data, just fill in what data you do have for each blood test or treatment. At a minimum, to help the researchers put together a groundbreaking presentation for ASH, it is suggested that you at least provide your IgM and hemoglobin data from the following points in time in your journey with WM:
• at diagnosis,
• at the start and completion of each treatment course you’ve had (that is, after all cycles of a course are completed), and
• your most current data,
Then, when you have time, you can work your way back, adding additional data as you go along.
If you appreciate and have benefited 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! And don’t forget, the due date is July 1!
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 email@example.com(link sends e-mail).
P.S. If you already registered, please ensure you have consented by clicking “My Consent Details” in the top right-hand corner of the page following log-in.