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: email@example.com. 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 firstname.lastname@example.org. 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:
- European Organisation for Research and Treatment of Cancer (EORTC) QLQ C30 questionnaire
- Hospital Anxiety and Depression Score (HADS) questionnaire
- Brief Illness Perception Score (BIPS) questionnaire
- 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.