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Health Related Quality of Life (HrQoL) Outcomes Observation Project (QoL-WM)

This project aims to collect information about health and well-being directly from patients with Waldenstrom's macroglobulinaemia, so that we can better understand how WM impacts on daily life.

The Rory Morrison WMUK Registry - Quality of Life (HrQoL) Outcomes Observation Project (QoL-WM) is an opportunity to contribute to a unique research project that is capturing information about:

  • Physical well-being
  • Psychological well-being
  • Social well-being
  • Daily-life functioning

This is a stand-alone research project that any Waldenstrom's macroglobulinaemia patient can join, irrespective of whether your hospital is signed up to the Rory Morrison WMUK Registry (RMR). It involves completing a questionnaire every three months about how you feel on a day-to-day basis. The questionnaire will be sent to you by email.

How do I take part?

Contact the RMR team by email to express your interest and find out more: registry@wmuk.org.uk. The team will then send you information about signing up. 

You can opt out at anytime and withdraw from the project by contacting us by email at registry@wmuk.org.uk. This will have no impact on the care you receive.

After signing up, you will receive an email four times a year from us with a link to an online version of four Quality of Life questionnaires:

  1. European Organisation for Research and Treatment of Cancer (EORTC) QLQ C30 questionnaire
  2. Hospital Anxiety and Depression Score (HADS) questionnaire
  3. Brief Illness Perception Score (BIPS) questionnaire
  4. EQ5D questionnaire

Your responses will be entered into the RMR and analysed as part of our research to understand how WM affects patients' quality of life.