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Ed Forum 2017

WM registry, WhiMSICAL, now has a Quality of Life questionnaire

Jan 21, 2019

The WM Patient Database, WhiMSICAL, now includes a globally validated Quality of Life questionnaire (EORTC QLQ-C30). This new set of questions will enable researchers to map quality of life data to treatments, providing useful information to medical professionals in the clinical setting. It also will provide much needed data for submission of applications for approval of new treatments for WM.

The QoL Patient Reported Outcome (PRO) addition to WhiMSICAL was announced at the WM International Patient Summit (IWWM-10) in New York City on 11 October, 2018 (see related poster here). Existing WhiMSICAL members are encouraged to enter their QoL information in Question 20 now and every three months thereafter.

Among the results and analysis presented at the Summit, based on treatment and test data provided by patients, are:

  • Globally, there is a significant variation in the type of first-line treatments (37 unique regimens)
  • 12% of patients have stress scores consistent with posttraumatic stress disorder (PTSD); this is the first time that this syndrome has been included in the WhiMSICAL database!
  • Median time from diagnosis to first-line therapy for US patients was 48 days; for the rest of the world, it was 114 days.

If you haven’t signed up yet to participate in WhiMSICAL, please do so now at www.cart-wheel.org. For further information, click here.

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