WM Patient-Entered Data Published in American Journal of Hematology – More Data Is Needed and You Can Help!
Congratulations to all who entered their data into the WhiMSICAL Registry. Your efforts have directly added to the field of WM research. Newly published patient-entered data provides new insights into WM-specific treatment outcomes and COVID vaccine responses. More participants are now needed by July 12th to strengthen these results for presentation at the premier hematology conference: the American Society of Hematology Annual meeting 2021!
The WhiMSICAL registry, built through a patient-clinician investigator partnership, is a global database for WM patients to enter their own data. Results of the WhiMSICAL study have just been published in the prestigious American Journal of Hematology HERE. Key findings include the longest time to next treatment after 1st line therapy in patients treated with bendamustine rituximab, and a better quality of life in those on Bruton tyrosine kinase inhibitors compared to recent chemotherapy.
Over 450 patients from 19 countries contributed to this first global registry for WM. Published results from data entered by WMers into WhiMSICAL is freely available at the link above.
Highlights of the study so far include:
- Significant variability in 1st line therapy choice globally, with 46 different types of therapies given!
- USA patients commence their 1st therapy almost 3 times faster than the rest of the world.
- 1st line bendamustine rituximab has outperformed the Bruton tyrosine kinase inhibitors (BTKi, e.g. ibrutinib, zanubrutinib) and rituximab alone in time to next treatment. The findings are preliminary, however, without exact matching of the groups. More participants, and longer follow-up of existing participants are needed to validate these exciting preliminary results.
- Patients on BTKi report better quality of life scores than those who recently received other treatments.
As you know, COVID-19 vaccines are now rolling out globally. WM patients may achieve impaired vaccine responses due to their WM condition and treatment(s). As a result, new COVID-19 related questions on testing, infection and vaccination have been added to WhiMSICAL – please take the time to go to the registry and submit your information to this important and urgent research study for WM patients.
From anywhere in the world, you can join the WhiMSICAL registry by registering and completing consent at www.cart-wheel.org, and then filling out the questionnaire. Your answers can, and are recommended to, be continually updated, especially at times of change to your condition or treatment. Please note that it doesn’t all need to be done in one sitting; you can enter as much (or as little) as you are able to provide each time you access the registry. (Naturally, the more data that is collected, the better the outcomes for further research.)
For those already participating in WhiMSICAL, thank you for contributing your patient voice to peer-reviewed research. Please return and continue to update your data at www.cart-wheel.org, making sure to complete the newly added COVID-19 questions and update any changes to your treatment (question 9) and quality of life (questions 20 and 21). We need your help to provide “big data” to increase the power of this research by increasing the number of participants. Together, we can help answer some important questions in WM research as we search for a cure.
For any support with participation or further information on WhiMSICAL, click HERE, or contact [email protected].