Congratulations to the WhiMSICAL research group on the recent publication of their work in the American Journal of Hematology. The WhiMSICAL database is the first of its kind to capture demographic, clinical, quality of life and outcome data provided directly by patients. The research is a collaboration between consumers represented by the International Waldenström's Macroglobulinemia Foundation (IWMF) based in the United States, WMozzies in Australia and clinician researchers.
The article, titled “WhiMSICAL: A global Waldenström's Macroglobulinemia patient‐derived data registry capturing treatment and quality of life outcomes” can be viewed online here:
Waldenström macroglobulinemia (WM) is a rare type of slow-growing, non-Hodgkin lymphoma with reports showing approximately 1000-1500 new cases occurring each year in the U.S. It causes overproduction of a protein called monoclonal immunoglobulin M (IgM or "macroglobulin").
The recently published WhiMSICAL research analysed data provided by 453 WM patients recruited through the CART-Wheel.org online questionnaire between June 2016 and July 2020. CART-Wheel.org is a secure rare cancers database hosted securely by BioGrid Australia and ethically approved by the Melbourne Health Human Research Ethics Committee and the WCG Institutional Review Board (previously known as the Western IRB).
Participants were from 19 different countries, with the majority either from the United States (46%) or Australia (26%).
A total of 46 unique first-line therapies were reported by 302 participants who had received treatment. This is despite the release of comprehensive treatment guidelines in 2016. Researchers suggested a lack of familiarity with the guidelines or access to therapies as a potential cause.
In addition, a high proportion of participants experienced leg cramps at diagnosis and 10% of the group reported stress levels consistent with post-traumatic stress disorder.
The insights provided by WM patients have resulted in a greater understanding of their experiences and real-world outcomes. Further recruitment of patients is planned to expand the dataset and address the key issue of improving survival of this rare cancer.