Apr 13, 2020
Researchers are seeking to better understand the impact of COVID-19 on WM patients – YOUR DATA IS NEEDED!
The WhiMSICAL registry, a global database for WM patients, is now capturing data on the impact of COVID-19. Our patient-derived data will help WM clinicians better understand the impact of the COVID-19 pandemic on us.
Patients anywhere in the world can join the registry and complete the questionnaire, with WM-specific data entered in Question 19which now includes COVID-19 specific questions, whether or not they have been tested or had the infection. To take part, you can register and consent at www.cart-wheel.org, and then answer the questions. Answers can be continually updated, so if you are tested later, enter the result of your COVID test as soon as it is available, and afterwards, return to update how COVID-19 impacted you. If you become unwell, you can have your caregiver or others close to you update your answers for you (with your login details). That way you will be helping researchers get the full picture of how severely COVID-19 impacts WM patients.
The COVID-19 question can be accessed at question 19, after entering Waldenström’s macroglobulinemia as your diagnosis at question 3. For those already participating in WhiMSICAL, please return to www.cart-wheel.org, complete the COVID-19 question and update any changes to your treatment (question 9) and quality of life (questions 20 and 21). For those new to WhiMSICAL, we do encourage you to enter your diagnosis, symptoms, treatment and quality of life data as we seek to provide big-data to describe the WM patient experience with WhiMSICAL. You can complete this valuable project in stages during your social isolation!