July 16, 2020
We urgently need patients with Waldenstrom’s macroglobulinaemia to join our Rory Morrison WMUK Registry – Quality of Life Project, collecting data around experiences of living with WM and helping us to better understand the WM landscape in the UK.
The Rory Morrison WMUK Registry collects information to help us understand the WM landscape in the UK and gain an accurate picture of this complex disease. In addition to the clinical information that is entered by WM health care teams around the UK, we also collect data as part of a separate Quality of Life Project directly from patients about their experiences of living with Waldenstrom’s macroglobulinaemia.
We urgently need more people with WM to join our Quality of Life Project. By signing up, you will be asked to contribute information about how you feel physically, psychologically and socially, as well as sharing how WM impacts on your daily life. You will complete a questionnaire every three months, which is sent by email so you can do it in your own time.
The data you share will help us produce a comprehensive and insightful report due to be released in early 2021 that will describe the current WM landscape. Reports such as this are a powerful tool in helping the charity improve access to treatment and care for WM patients.
To sign up, so that your data can be included in this vital report, please email registry@wmuk.org.uk by 5:00pm on Monday 27 July.